16 November, 2012

Rosacea and depression


By Christian Hopkins

It is widely documented how rosacea can affect someone's self esteem, confidence and mood. The following publication in PubMed struck me:


Delusion of disfigurement in a woman with acne rosacea

"A 36-year-old woman with newly diagnosed acne rosacea is presented. Her skin changes were noticeable only under closest scrutiny, but she quit her job, became despondent about her acne, and developed suicidal ideation. The diagnosis and treatment of this patient allow a broader discussion of the somatically focused patient whose ideation reaches delusional intensity."
[PubMed - indexed for MEDLINE]

This article not only underlines the amount of distress that even a seemingly subtle case of rosacea can cause, but also the response that many rosaceans that I know got initially from both doctors and friends and family: you are being delusional. Or overreacting. They based their opinions usually on the amount of redness they saw in my face. Nowadays most people and doctors don't fail anymore to pick up on the red swollen cheeks, but at the time I had similar burning and flushing but it just didn't show as bright in my face as 13 years down the line. Another case that comes to mind is the recent suicide of a 20 year old student who suffered from ongoing facial blushing for most of his teens and who wrote in his goodbye letter: “I am tired of blushing. It is exhausting to wake up every day and have to find little ways to avoid blushing situations.

This must be the most horrible thing to read for any parent and my sympathies are fully with the family. But while reading the article I couldn't help but noticing that the parents also seemed in a similar state of fog and haze for a long time. That is a bit rash to say I realize, but that was my first thought at least. However, in this case the boy himself had been hiding his problems from the outside world. They said that they rarely saw Brandon Thomas blush, and if they did, it wasn’t a worry considering he was fair skinned and blonde. "It wasn't even happening here at home" dad says, "I think this was his place of comfort.” When Brandon confessed to them how he’d been struggling with crippling, chronic blushing for four years they were stunned therefore. They soon realized that Brandon was fighting a daily battle with what experts describe as pathological blushing; facial reddening that goes far beyond the typical flush of embarrassment.

Mum recalls when her son called her in tears last fall: “I was sitting there trying to make sure I chose my words carefully: ‘OK, Brandon, you know we all blush,” Dawn Thomas recalled. “And he said, ‘Mom, no, you need to just go look it up." Online, she discovered what Brandon had found: blogs, anecdotal reports and a few scientific studies that described people for whom routine blushing had become unbearable.
The biggest thing for him and the biggest thing for all the people who suffer with chronic blushing is the shame,” she said. “People do think of it as trivial because we all blush. And what’s the problem?”
From the age of 15 on, Brandon had been dealing with bouts of blushing that came without warning and he'd flush bright red from his neck to his ears. “He would be laughing with people and someone would point out, "Oh, look how red Brandon’s getting," said Dawn Thomas, recounting what Brandon had told her. “And he’d be thinking, ‘I am?' Because he didn’t realize he was turning red.”

Friends recall that the color was noticeable, but that Brandon had been such a funny, energetic and well-liked guy that it didn't draw too much attention. Some friends may have joked about the blushing, but it was never mean-spirited according to his friend, and no one ridiculed Brandon. "He was the last person in the world you'd think would do this." His mum recalls however how the friendly pointing had made Brandon embarrassed, after which he started dreading the blushing that he couldn’t control, leading to what experts call “erythrophobia,” or fear of blushing. “Since it’s visible and uncontrollable and frequent, you are always on the alert. You dread blushing or the possibility of it happening,” Dr. Enrique Jadresic explained. Jadresic is a Chilean psychiatrist and an expert on the disorder who wrote “When Blushing Hurts: Overcoming Abnormal Facial Blushing.” He states that “Blushing, which presumably is a minor symptom, can erode not only self-esteem, but also the will and desire to live.” He mentions ways to treat chronic blushing, including hypnosis, therapy, anti-anxiety drugs and, for some, a controversial surgery that snips or clamps the nerve in the torso that controls flushing. But like Brandon, many so-called blushers suffer silently, ashamed to admit to the condition that colors work, romance and other crucial parts of life. “Clearly, we do not all blush the same, to the same extent and severity,” he noted. When people blush more frequently and intensely than normal, it can trigger severe psychological and social reactions. Sixty percent of blushers in one study and 90 percent in another study met the diagnostic criteria for social anxiety disorder, or SAD, he added.

Before jumping from the 11th floor balcony of his Seattle dormitory last May Brandon wrote a five-page note, blaming his suicide on despair caused by his facial blushing. “I am tired of blushing. It is exhausting to wake up every day and have to find little ways to avoid blushing situations.” “I blush several times a day. It doesn’t have to be when I am embarrassed either,” he also wrote. He would blush in class, on the phone, while driving in his car, late at night when he recalled blushing during the day. He would take the stairs instead of the elevator from the 11th floor in order to avoid meeting someone he knew entering the elevator on the way down, which he knew would trigger a blush. All of this agony was kept secret, Brandon's friends and family say. 
Once they knew about the problem, Brandon’s family did all the could to help him get rid of the blushing. 
The took him to doctors who put him on low doses of anti-anxiety drugs and beta-blockers. They discussed the possibility of endoscopic thoracic sympathectomy, or ETS, a highly controversial surgery that is sometimes used to treat both excessive sweating, or hyperhidrosis, and pathological blushing.

Bad flare

Jadresic, who had the surgery himself, believes that it can be an effective cure. He led a study of more than 300 patients published last year that compared surgery, drug treatments and no treatment. Among those treated with ETS, 90 percent reported being either “quite satisfied” or “very satisfied” with the results.
However, the surgery is also very controversial and there have been countless patients who reported serious side effects, including unusual sweating or weakness, sometimes without controlling the blushing. There are webpages and forums dedicated to the victims of ETS, some who claim to have become crippled by it, so please read their stories before even considering this treatment.

Brandon wanted the surgery, but reluctantly agreed to try drugs and therapy first, his parents said. During an anxious meeting in Seattle, a doctor told Brandon the surgery had only a 50 percent chance of success. In response, the family planned to see a new doctor in New York this summer, one who was more familiar with the operation. If that didn't work, they planned to visit an expert in Ireland who claims to cure chronic blushing. Before they could take those steps, however, Brandon was gone.
“He was so hopeless by the time [he told us],” his mother said. “He believed in his mind that he was never going to have a successful career, and that he would never have a successful relationship because of this.”
Now they’re speaking out about chronic blushing, hoping to create a website that gathers information about the condition all in one place, providing links to Jadresic’s book, which may have provided hope to Brandon if he’d seen it earlier. The website is still under construction. People who want to know more -- or to contact Brandon's parents -- can send an email to info@chronicblushinghelp.com. “One of the reasons he took his life is that if he took this drastic measure, it would raise awareness,” Dawn Thomas said. “He wanted his death to have an impact.” (Source)



I found this powerful and very sad article. It was discussed in a thread on The Rosacea Forum (here)

Not only did I find countless rude, abusive and ignorant responses on forums (I made a little summary below), but even the boys own parents seemed to find it hard to understand for some time how such a small infliction could have resulted in such drastic measurements. The parents of a 31 year old rosacea patient who jumped off a bridge to her death were baffled as well. The young woman Vicky Norfolk had recently developed rosacea and the distress over it and her fear of it becoming worse apparently drove her to her death. In an article in the local paper, her parents blamed the construction of the bridge (fence too low) mostly, and dismissed the cause of her psychological stress to a degree in my point of view. 
Her mother recalls how Vicky had a warm upbringing and had been a very happy girl, until she developed rosacea. The mother is quoted saying that her daughter struggled to look past her skin condition, even though it was only visible if you looked closely. In the four to five months that she had rosacea, Vicky became very depressed and obsessed by it. Although I feel extreme sadness for the parents, their own conclusions in this paper strike me: "The bridge is far too accessible, with no suicide barriers. "We want valuable lessons to be learned from Vicky's death. "We need to stop allowing this to happen over and over again."

I doubt that the problem lies here with the bridge, although I don't hesitate to believe that it will indeed have had low barriers. The problem seems to have been the rosacea and the distress of this woman over it. I assume she had looked it up, had read about the grim treatment options and long term diagnosis (no known cure, progressive nature) and stressed out. She might have suffered from the terrible pain and burning in her face, that every rosacean knows too well and that can be bad enough to make you want to run screaming onto the street and find the nearest fire station hose.
Mrs Norfolk told how she had gone with her daughter to see doctors on two occasions in the months leading up to her death. She said: "Vicky was good at covering up the fact she was suffering from depression but, over time, she couldn't see anything else in the mirror any more. We had planned for all of us going away together so we had a lot of nice things coming up and we tried everything we could to show Vicky there was nothing to worry about." "It overtook us all. Not knowing how to get the help we knew she needed was so distressing." Mrs Norfolk said Vicky's sister, Colette, tried to convince her there was nothing to worry about.
"Colette took photographs of both Vicky's and her own nose and asked her to choose which one she thought was more attractive. "Based on the photographs, Vicky chose her own nose, which is so saddening.
"She was in need of a confidence boost and we thought things like this would help, but she had illusions it was going to get worse." After hearing the statements and evidence at the hearing, coroner David Rosenberg said: "While she might have been stable, it was clear Vicky was suffering from depression. My verdict is that she took her own life while the balance of her mind was disturbed." (Source)



By Christian Hopkins
The mother seems to calls the fear for worsening of her rosacea an 'illusion'. The fact that she even now, more than a year after her daughters death, still doesn't seem aware that rosacea can be in fact a progressive disease is a little bit disheartening, given the distress her daughter went through over this. The Daily Mail also reported on the story with the fabulous heading 'Woman, 31, jumped from Humber Bridge and killed herself over fears her minor skin condition would deteriorate.'

Like I said before, I think that the family might have overlooked the cause of her psychological stress to a degree. They certainly spent very little words on the rosacea, and the same happened for the many reporters who wrote about it and the countless responses from the public. Blindly picking the most attractive nose goes beyond the worries and pain patients have over their skin problems, although I am sure it was meant well. We discussed this story on the rosacea forum as well.



Rosacea most likely will bring on strong feelings of anxiety and stress for some patients. Some people had lingering facial blushing for years before the rosacea started, and others got it out of the blue. Even the early stages of this condition can usually cause distress, as soon as the patient starts to realize that this is not a transient skin rash or a ‘simple’ acne eruption. Once the verdict is read and there has been googled, searched and read, it becomes clear that rosacea has been noted for many centuries, but it is still not clear what causes it and there is often no cure for it. And even worse; the condition is labeled as progressive. This can be enough to cause a lot of fear and distress. Often rosacea gets worse over time, when the patient starts trying out different treatments or contrary does nothing. Antibiotics are generally prescribed without much critical selection of subtypes, and many subtype 1 blushers and flushers, burdened with overall redness on the cheeks and burning, will not benefit from this. Or even become worse. The same goes for topical creams, that are usually too harsh for the delicate rosacea skin of subtype 1 (erythema and flushing). Then the real stress often starts: doctors are unsure what next step to take, the stress itself can worsen the rosacea and in time many patients will start to avoid triggers in a bid to get some control back. This can have obvious consequences for their social life. Some people can start to have problems at their work place, when the temperatures are too high, when there is no fresh air or they have to sit for prolonged times under bright fluorescent lightning which can stir up the facial inflammation. Not everyone can handle make up to cover the redness and most people become very self conscience, to the point where some will avoid social confrontations all together when they havea flare up. Many rosacea patients that I know personally or through forums mentioned that their social life was hugely impacted by their rosacea sooner or later. Going out is not quite the same when you can’t drink alcohol with your mates (huge flushing trigger), when the dancing will make you overheated or when your burning face makes you unable to leave the door altogether. Even when to others your cheeks might look ‘rosy’ and fine, the burning sensations can be intense and I found it personally extremely difficult and daunting to explain and convince my family and friends of this. The fact that they said they didn’t see what I meant and suggested that I was (initially) obsessive over small blemishes was very hard to digest, when I already felt anxious and isolated. With my sister(s) and mother it took over 5 years before they started to really see how severe my flushing was and how much pain and despair it gave me. I have spent one Christmas alone in a room upstairs with the windows open whilst putting cold packs on my cheeks with a blanket around me and a plate on my lap, while the family downstairs didn’t want to put the heating down and my face felt like it was severely burned. 


Christopher McKenney
Many people with rosacea deal with a lowered self esteem, avoidance of social situations and a restricted life style. Until they have control back over their condition. And although there are many treatments out there, the condition can be reputedly difficult to control and treat. Even friends who got control back and got relief over the years have been impacted by it. I personally had many years of stress and doom and gloom, when I tried to figure out my skin problems, neglected parts of the student life that I had so much looked forward to. It was a shift from what life used to be like but I found ways to get happy again and get things back on track. Then one year followed of utter despair, when my flushing and burning was 24/7, and I felt like I was burning up and in hell. This was after a failed IPL treatment. I saw many dermatologist, asked about operations where they would remove some blood vessels, skin transplants even, anything, to make this inferno stop. No one could help or had any suggestions. Luckily a great friend took me to Dr Chu in Hammersmith Hospital London, who had some suggestions on anti flushing medication that took the worst off my rosacea, but I still have periods where I feel very limited, confined, burned and hot and sore and most of all, ugly. Well, most of all sore actually. I don’t tell many people about my rosacea, only my inner circle knows and many facebook friends have no idea, although most will have noticed it by themselves by now, if I even make appointments with them in person. It is one of the reasons however why I try to avoid meeting ups with long lost new found old friends.
What bothers me a lot, is the harsh response that part of society has nowadays on everything, including skin conditions. I read comments on the suicide news on some forums and the way people wave it away, mock it and laugh about it is systematic and exemplary in my view. I don’t have to have suffered from cancer myself to sympathize with patients, or MS to show understanding and interest. But many people out there, especially the ‘successful’ ones who think they created their own success and happiness and health as something that you can extort single handedly,  can be very rude.
Another thing that makes rosacea difficult to deal with, is the impact it can have on the lives of people around you. I ask my friends to put the heating on low when they invite me over, and many rosacea friends of mine hand out blankets and warm water bottles to friends who visit them, while they have a small fan on low blowing on their face themselves and the heater OFF. Going out to restaurants or clubs is always challenging I find, and something I have to drag myself to, usually to my own relief in hindsight when it turned out less hellish than I anticipated. However, there are some things that you can do to alleviate some of the depression I found.


First of all; try to accept that this is what you have to deal with. You have rosacea and no wonder cream or pill is likely going to take it away again. Although there is no harm in trying, and there are cases where a simple measurement fixed the problem (although I am slightly skeptical if they had real rosacea in the first place then), it helped for me to stop being in denial and just try to accept that this is my burden from now on. That most people have burdens and this is not the end of the world. That I would have to alter my expectations of myself, my life and my future and adapt them to my physical needs, at least for the time being. I am perhaps freaky in this, but it helps me slightly to read the news, hear about people in worse situations, dying prematurely from cancer, you name it, and you can read it in the paper every day. I needed this sort of horror scenario's for a while to put the rosacea in perspective. Yes, it is a horrible condition to have and yes, I would still give my right arm or leg to be rid of it (for real, ok not my leg but my arm perhaps), but there are still many things we can enjoy, perform, be and become and there is still outlook on improvement, in many ways and departments. It can indeed be a lot worse. But the reality of living with it can still be challenging for many. 


-Reading about my rosacea helped me, although the vast amount of information and opinions initially stressed me out. But knowledge can be power and the rosacea communities online are all wonderful places of information and support. Don't hesitate to join one and share your story. 



Christoffer1997 wrote on May 5th 2016: "Hi everybody! This is my first post. I have had rosacea for about two years, i'm 19 btw. My rosacea is pretty mild i think? Before rosacea I had absolutely perfect skin, no acne no redness nothing. I used to be a very polite, open, tolerant and happy young man before this horrible disease, now, I'm always depressed, anxious and tired I cancel many things I would like to go to because of this disease. My biggest triggers are cold waether and hot weather as well as oral presentations. Speaking a foreign language like english in fornt of people makes me go bright red, because i hate my dialect even though my teacher says i'm very good. I can no longer look people in the eyes or have a normal conversation. I am very good at hiding my depression, only my mom knows just have I actually feel. And I know she's tired of my constant moaning. 

I have thought about killing myself, because it's so exhausting to pretend like you are happy for 6-7 hours every day when I'm at school. And the worst things is that I know it won't get better. I can have really good days, where you can't tell i have rosacea, but the good days just make the bad days way worse. I have tried everything. Steroid creams, pills, a healthy diet and exercise but it didn't help. Because living a healthy lifestyle didn't help, i started smoking cigs and weed every day while listening to Nirvana, I can really realte to Kurt I understand his pain in a weird way. I know it won't do my rosacea any good, but what's the point in trying when it's chronic and there is no known cure. Have any of you guys managed to live a normal life while having rosacea? To me, it seems absolutely impossible. I know i'm gonna die at a young age, I just don't know when, but i really don't think i'll be 30 that's for sure."

Andy_uk replied: "I know how hard it is mate, but saying things like that are continuing with your negative cycle. You need to break the cycle, keep trying a different regime with your skin until one works a bit then stick with it. There was a woman who had it chronically the cured her self with the kalme skin range and now she leads a normal life. There's hope out there for us all. I have a constant bright red face and people are constantly asking me if I'm alright. Some days are good some are bad, just need to develop a thick skin and carry on. Most good people look for the beauty within and what type of a person you are, not what you look like. Chin up pal"

Christoffer1997 replied: "I don't know what started my rosacea. My mom has facial redness, but she says it's sun damage, since she didn't wear sunscreen while on vacation (it wasn't invented or something.) She used to go to the Black See for 10 years and she was on holiday for more than a month. I have been to Turkey and Spain once, i didn't wear sunscreen which was very stupid. She says two years aren't enough to get sun damage. My mom is convinced that my redness is caused by puberty and not rosacea. I have seen a few derms, i'm very lucky it's free to see them in Denmark. The dermatologists all say different things. However, my redness has gotten better since fall last year, during that time it was very bad. My other four siblings who are all older than me don't have this disease and they don't take care of their skin, and it frustrates me, don't get me wrong i'm glad they don't have rosacea! My absence % at school is higher than the school tolerate, but since my grades are alright and they won't kick me out of school plus the can't afford it, they get paid when studens graduate. So i'm hanging in. But i just can't see myself studing for another six years... I am very anxious when writing tasks cause I think the teachers laugh at my writing for some odd reason. I really hope you find a cure, Andy!!"


Oleva replied: "Dear Christoffer
Sorry to hear you are so down. I have had rosacea on and off since I was 17. I am now 57! So I have managed to live a normal life. In my case it takes the form of very severe flushing. I live in London and was on the tube the other day when I had a massive flushing attack. A woman actually asked me if I needed a doctor! I expect you can imagine how embarrassing that was. In London the tube seats face each other so it means that you have a whole row of people facing you. Guaranteed to bring on an attack. But I can deal with it much better mentally now. When I was 17 I hadn't met the vast amount of people I have now and so I didn't know that EVERYONE has some sort of problem to deal with. In England, nearly 1 in two people are struggling with depression. So when we think everyone is focusing on us because our faces our red they are probably actually thinking about whatever is worrying them. I also learnt that people tend to really like people who flush. Just look at Lady Diana. She was nearly always flushed. I think it is because as I said before life is really tough for most people so when they see somebody blushing it makes them feel as if we are all in it together. That there is somebody like them who isn't perfect. It really helps most people to talk about it when they are really down so I am quite sure there would be lots of people who would reply to you on this thread if you wanted to let off steam. I hope this helps a bit.

best wishes
Oleva"





What if physical illness
was treated like mental illness
Here you can read testimonies from rosacea patients, telling about the impact rosacea has had on their every day life and their feelings of depression:

-Trying out treatment options gave me some sense of control, outlook and strength. Trying out different things at the same time might seem appealing (you are spreading your success chances), but often makes it all much more complicated. When you do see improvement you are unsure what exactly caused it, and when you are getting worse you have to dismiss all the things you are trying out, when in fact only one thing might be causing the problem. So I would advice to restrain yourself and try out one thing at a time :)
I try to keep my diet, stress levels and other factors as stable as possible during the trial period, and I keep a little diary, because in a week or two time, you will not remember most of the details.

-Stay active, even if you don't feel like it. Try to keep seeing friends and bring your cold pack if needed. And when you don't want to face people, make sure you make a daily walk at least. Get some fresh air, walking can order your thoughts and make you feel a bit more fresh and alive.

-Consider taking antidepressants. The problem is usually, that many rosaceans are sensitive to many triggers, including some medication. There are however antidepressants out there that won't make your flushing worse, and some are even noted to improve matters. Antidepressants can make things seem to much lighter and when you are on the brink of a real depression, try to see it as a 'nothing to lose' situation, where you can take a chance with medication. Don't despair when one antidepressant isn't good for you, cause there are many out there and some people only find the right one after many trials and errors.

-Explain your friends as good as you can what you are going through, and the aspects of rosacea that they don’t see. Let them read some information or patient stories if possible. Having understanding and loving people around you, will make the struggle half as hard.





In many of the threads posted online, depressed rosaceans are told by well meaning respondents that they should be so happy that they don't have cancer/heart disease/Spinocerebeller Atrophy/...
I doubt that type of remarks will help. At some point people are just too depressed and suffering too much to find any solace in that type of 'pep talk'. Having a burning face that is out of control is much, much worse than most non rosaceans can comprehend. Luckily enough. Cause you don't wish it no anyone. And every patient has to deal with his or her limitations and challenges, regardless of how 'serious' they are classed and ranked by others; it doesn't change the status quo, which means dealing with the pain and discomfort and adaptation day in and day out. Finding the right medication is what helped me to take the worst most nasty edge off it all, although I still have a lot of bad days/weeks/seasons even. Antidepressants might be just the thing that can help you bounce back from the edge, giving you that extra zest of life and energy to fight and combat it all. Therapy might help... although I had some years of it, with different very good/qualified psychiatrists, but it didn't help me at all... But I analyze too much anyway and
perhaps it can help people who are feeling lost in their own emotions and who need more insight and such.. I do think it can be very helpful. But it won't solve your rosacea. It won't take away the daily inflammation and pain and the limited life style. It might give you insight in the way you deal with it emotionally and help you deal with day to day life, it might help you to find balance in your way of dealing with it. Be proactive when you feel very depressed about your rosacea however, either by trying out new medication that might alleviate your symptoms or/and by talking about it when you need that with a specialist, or by changing the way you designed your life around the rosacea if you can. By all means, talk about it, with other patients, with your family and friends, on forums, with a psychiatrist...




Something else I found recently, is that some people link inflammatory diseases to increased risk of depression. A substance called cytokine IL-6 is to blame transparently. It has been linked to depression in many inflammatory diseases where it has been found to be elevated (also rosacea). (Link)






.
I also firstly like to give the link to the a BBC documentary on the effects that acne can have on teenagers and the use of roaccutane. My own dermatologist Dr. Tony Chu is in it as well :)  :)
First link is for the docu on youtube, the second one for the thread on the rosacea forum that deals about this documentary (Link):












I will make a small inventory of the positive (understanding/supportive) and the negative responses on both news items, in papers and on various forums



Understanding responses:


Davem81 wrote: "I have returned to the online rosacea community today after a few months away, and found this article. I myself have experienced many, many thoughts of suicide over the past 5 years, purely and exclusively linked to my rosacea. Don't get me wrong - I've never been close to being actively suicidal, but the idea has often been there. This condition has completely changed my life, and I don't mean for the better. From my experience, I believe that there is very little understanding of the mental anguish that this condition can cause. Even from doctors and other medical professionals. It would be nice to think that this poor girl's terrible suffering and ultimately her death may go some way to changing that, but alas I fear not. If anything, I fear that the psychological aspects of this condition are even more poorly understood that the disease itself!"

Ghost: "It's so sad. It doesn't seem like the guy joined a group on the web for support. Yet, his family was supporting him and helping the only way they knew how (which is a lot), taking him to docs. One of the comments is that perhaps the drugs he was given altered his mind. It is possible. And truly horrible and horribly ironic. There just aren't words. rip"

And: "Horrible news. But I am not surprised. So many rosacea sufferers go through life feeling like the living dead -- we cannot fully participate in the life that we see is out there. We feel ashamed, dirty, ugly, unworthy; the brunt of remarks. I'm sorry this lady didn't know how to get out from under that."

Brady Barrows: "It is odd to me that rosacea never comes up in the article. Flushing (or blushing) is usually the chief differentiator in a diagnosis of rosacea. Apparently his doctor felt the other signs of rosacea were not present. Very sad case."

Melissa W: "What a tragedy. It breaks my heart that so many people have to go through such pain. 

By Christian Hopkins

No matter the diagnosis this poor young man felt intense emotional pain due to his condition and he couldn't fight it emotionally anymore. Truly breaks my heart. I hope everyone here realizes that with each and every day there are new breakthroughs in so many diseases and one should never give up. Life is too precious and no matter how bad things might seem at the time they will always get better. If you just let the bad time(s) pass. You will start feeling better. A study was done with failed suicide victims and I believe almost 100% of them (if not 100% of them) all said as they took that step to suicide (eg jumping off the bridge) they instantly regretted the action but it was too late. They thankfully survived (that's the only way the results of the study was possible obviously) and got a new lease on life. I don't know the stats on if they were able to get therapy and go on to lead happy and productive lives but at least they had the chance. Suicide is final and there is no going back so no matter the pain one feels at any given time you should always know it will pass and you will feel better. There are new treatments on the horizon and if you are feeling depressed I urge you to seek therapy/counseling and talk it through with a professional and with your loved ones. Think of them- how terribly missed you will be and what an impact your death will have forever on those left behind... "

Mistica wrote, in response to this: "Its sad but people forget that as bad as you think you may have it there is always someone worst off than you who would kill to be in your shoes....... Id gladly trade my crimson red mask for a "blushing" appearance any day. DennyB: I do understand what you mean, but in this case, be careful what you wish for! Blushing can turn into severe, debilitating flushing, which can be horrendously debilitating! Some of the extreme flushers here, me included, are crippled by the disorder. It goes way beyond a matter of appearance. As for the poor lad in question, it is a pity he didn't join this forum. Judging by the article, he only looked at blushing sites."

CursedForALifetime wrote: "I know exactly what he was going through... Turning red ten times a day ore even more often for no reason. People not only making fun of you but telling you if they were you they would jump from am bridge. It´s just living hell. The only reason I am still alive is ETS surgery. Now the blushing is almost gone though I still suffer from permanent redness and flushing due to rosacea. And of course I now sweat pretty much as a side-effect to surgery."

Bloem wrote: "Very sad. I find the term minor skin condition in the headline sort of misplaced."

FlushedBean: "It makes me a little angry that they blame this mostly on mental health. I think we've been over this before, some people handle hardship better than others and are more prone to depression and pessimism, but her death was caused by an incurable skin condition on her face that she felt she could not live with. Was she in pain? I know I am. Just a little more understanding about the ramifications of rosacea and maybe a push for better treatment might have been helpful in the article. Not saying what she did was reasonable, just want some more attention given to this disease. I hope her soul finds peace now and that somehow her family finds the strength to carry on. Such a tragedy."


Franses wrote: "Oh my this news just brakes my heart, I read it yesterday when I was really down already, and had those suicide-thoughts that always pop up automatically when my rosacea gives me bad times. I always tries to overcome those thoughts, and this forum (and my music - can´t leave cause I have my albums to record etc...) have helped me a lot with that, it gives me hope for some reliefs in symptoms, as been written here, it take time but you can get better, even go in to remission.
My condition is steadily getting worse, this were the first winter I haven´t been able to go outside, and yeah in Sweden we have winter like more than half of the year, and now I even can´t tolerate a little windy summer-day either, I´ve noticed, better than winter however. And the rest of my body is also getting symptoms, like the hands and feet, well that's for another thread, just got caught by the moment....sorry...
I wonder if she knew about this forum(s), if she was a member here? What was the reason for her losing hope? Had she tried everything already, an so on, I wonder..... I think it is important to discuss and highlight this possibilities, or such things, so that people here on this forum doesn´t get inspired by this kind of action´s.... Maybe It can be like anorexia, it´s not contagious by some virus, but psychologically.

And yes, the statement "minor disease", are the fu-ing kidding me. Oh my god that really pisses me off!!!! This shows how much lack of information the world having about this disease, so frustrating that this is not already a world wide knowledge. Even if not all of us rosacean´s are experience pain and parasthasia (like I do, not severe pain, yet, but parasthasia-like thing, and a pulsating nose) doesn´t mean it is´nt a hard diseases to have. A disease have to be in counted (or what is the word? included?) in to a context, that in this case is not just a matter of feeling pain, meaning the body´s feeling in itself, but also that what society´s and culture´s feelings have about bodies, the expectations of abilities. In our world/culture/society, ability also can be about look, that become your body´s feeling of the society...Well as in her case a possible future with red all over the face, pimple and such, or like they said the disease was just noticeable when looking close, and feeling depressed about that is not a matter o vanity I think, but as her being a human and a woman;
I see attractive men with rosacea all the time, I wouldn´t care less, but as a women I don´t now if men will find me attractive, woman are more "body" then men in society (men also feeling the must of looking good, but at a different level as women, men also have more opportunities to also be seen as "brains" that reflects over to there appearance, this not includes all men but men as a group) and maybe that what she was feeling to? Her bodies feeling of society. I have no idea, men dies from this disease as well of course, just me as a woman and former gender student reflecting my thoughts. And my feeling of society of course, and when I am in it also hoping that I´m somewhat wrong. "

Sally wrote:  "A few months ago I sent my dermatologist a photo of the mental hospital I once found myself locked up in - Parkside, Adelaide, Australia, 1973. I had attempted suicide because of my dreadful skin and was 'sectioned'. The building was a gloomy Gothic looking edifice and I wanted my derm to realize how low one could become. I haven't seen him since I did this but I hoped it would make him treat my complaint with a little more compassion, although I doubted that it would. He's now left the NHS and is very much into making money since he opened his private skin clinic. Any empathy he might have had is fast diminishing. Very sad."

Arlene wrote: "Once or twice I've gotten angry enough about something in the newspaper to go through the effort of tracking down a reporter ( I was able to get their Email address on the paper's website) and written to them. I don't know if it would make any difference, but at least its cathartic.
I wish , somehow, we could get the press interested in writing about how devastating the disease can be especially when it's compounded by the ignorance of doctors, insurance companies, governmental agencies, and the public at large." 


And: "Looked up the interview that was referred to and as usual it's in the context of "what is my skin routine" etc. Like Cynthia Nixon they all talk about having Rosacea that was quickly fixed by a pill and a lotion and all is well in their lives. This kind of stuff is a mixed blessing. While I appreciate that they have given more recognition to Rosacea, it can also reinforce the idea that it's a "minor skin condition". I'm talking about an in depth article (like in the times Tuesday science section)where there is a serious discussion about the full spectrum of the disease and the serious impact that it can have , psychically and emotionally on people's lives. This is the stuff that people really don't know about."
   
Babdab wrote: `I've read some of the comments and I don't understand the need to place blame in this tragedy. I don't believe anyone is to blame, especially not the parents their grief is no doubt unbearable. Brandon's parents took action concerning his condition by taking him to doctors, counseling and also considering surgery. That doesn't sound like parents who have "failed" their son as some have suggested. I've read several comments from others who have this condition although they vary in age and gender the common thread seems to be the anxiety, isolation and depression. I'm grateful they shared their stories in order to help others understand how it has changed their lives and that it's not the same as most of us experience when we blush. I do not agree that Brandon's suicide was taking the "easy way" out or that he was "weak". Brandon was obviously in pain, unfortunately he probably believed the only way to stop that pain was suicide. A close family friend of ours committed suicide 3 years ago, he had great parents and people who loved him very much. However, in that moment I'm sure he felt totally alone I wish he knew he wasn't. It's not that kids today are "soft" bullying isn't the same thanks to technology, now others can continue to harass and bully 24/7 to many people through social media, texting and internet. My heart and prayers go out to Brandon's family and friends, thank you for sharing Brandon's story.` 

Wuloso wrote: ´Most people dismiss this, and I doubt this will do much to change things, though it is
nice to see it getting some mainstream coverage for once, even if it had to come under these circumstances. This problem, while it may sound minor, can be debilitating. If you have a problem in social situations where you turn bright red and stay that way for several minutes or even hours, the reaction people may have is to avoid social situations altogether. It can be a very lonely existence when you have difficulty carrying on any more than random small talk because of the vicious circle of fear of turning red.
The worst part is when some idiot tries to build themselves up by pointing out how red you are, compounded by their assumption that you are embarrassed, guilty, or another negative emotion typically associated with being red. Guess what. Their face feels like it's on fire, and they are suffering physical and emotional pain because of it. You don't need to be an ass and point it out. I guarantee you that, if they suffer from erythrophobia, you are causing them days of depression and anxiety (during which it would not be surprising if they think about suicide), as well as contributing to the severe damage of their long-term mental health, all because you wanted 30 seconds of pleasure by saying they are red. Hope you got a good laugh or whatever you were going for out of destroying them.´  


The blushing one wrote:  ´Ugyan, I feel your comments on this thread are a little tasteless if I may

add. Instead of expressing any sort of sympathy for a young man who has had his life literally taken away due to a blushing disorder, you just wanted to try and say this was an infomercial for ETS surgery. With all respect, you must not realise the devastating impact that a blushing disorder can have on a person. I don't want to have a slinging match, I just want you to understand that people can suffer just as much or much more than you with a blushing disorder, even pre surgery. By no means am I for people just having ETS nilly willy but when it comes to fruition that you have literally tried every possible means to get rid of your blushing, and lost your ENTIRE life because of it, like I have, then I do not  think trying ETS surgery is a completely stupid idea. Because of blushing I lost my education, love of my life, family, any shed of confidence that I have ever had, money and much, much more. ETS surgery has not worked completely for me, but over this past year I can see that it has helped A LOT with the blushing, before I did not believe it had helped, probably because of what they call 'phantom blushing'. And yes, I have suffered side effects because of the blushing, and would probably swap the last remainder of my blushing for more side effects, even though you may not believe so. Back when my blushing was at it's worst I would have easily decided to have my legs amputated if meant get rid of my blushing. That is my no means meant to belittle amputees etc, but I would of personally made the choice based on how much I was suffering because of the blushing and no one understanding. I attempted suicide more than once, due to going red literally EVERY time I made eye contact with anybody, my face burning and hurting to the point of agony.  I could literally not even see my own mother, who I am closer to than anybody in the world, due to the blushing disorder.
I really don't wish to sound as if I am having 'a pop' at you, all I ask is that you please just show sympathy for people suffering from blushing, and do not blast them for them being interested in ETS surgery.´

Amo011098 wrote: ´I actually have this and it's no joke. I'm not even through my freshman year of high school and its ruined my life. I'm afraid to go to sleep at night because I know when I wake up I'll have to face a situation where I blush. I feel the same way he did, I just hope I can find my way out.´

taalia22 wrote: ´I'm really fucking mad seeing people calling this guy a pussy for killing himself over "just blushing." It's not JUST blushing. You blush full on beet red when: your crush walks into the room; you're worried about the zit on your cheek; a sexual thought passes through your mind; you see somebody attractive,. Regular people have the subconscious controls to not do this. It would have been impossible for him to even have a small secret. Couple that with a phobia of blushing, and rethink things.´


 
















Negative/less understanding responses: 

Kiss My Feet wrote: "blushing is a physiological manifestation of your emotions. Its a sign of mental health that you CAN blush. You don't want to "swallow it down" by dissociating. You need to learn to accept it and reroute the energy with words. Don't be quiet if your face turns red. You have to digest the arousal with language."

John Hazelton Smith wrote: "wait, chronic blushing?"

critterzdad2 wrote: ´Most guys would like to BE him!´

Leon 45 Jones wrote: ´Way to go Brandon, you nailed it! Word Brandon Thomas: Nutjob, 20, commits suicide after struggling with uncontrollable blushing for 5 short years.´

CodeTwo2 wrote: ´Poor guy. If there wasn't such a ridiculous perception of there being some sort of "ideal" human... and let's face it, people sadly, are becoming more regularized almost by the month - then this guy would still be here.´ 

SpecterWSA wrote: ´you must have been very frustrated, and red in the face. AHAHHAH´

EmpathyWorks wrote: ´if you're going to kill yourself because you're embarrassed of blushing?? Good fucking riddance. there are people out here with WAY worse ailments and less support and potential than this waste of flesh, and those people are soldiering up everyday to create a better quality of life for themselves. 1 lless moron.´
(oh boy, doesn't reading this dribble bring you right in Kong-Fu attack mode?)

M1NDR34D3R wrote: ´Blushing appears when a person is either anxious or embarrassed. So I'd think most people have a "fear" of blushing (more or less). It's basically a fear of embarrassment. That's my take on it.´


electronicoffee wrote: ´This is stupid. Seriously? Some kid committed suicide cause he blushed a lot? This is Darwinian. I have no pity for someone who kills themselves over something that stupid and if his parents knew he had a problem they shouldn't have let him live in a dorm with 11 floors, much less a a shared space with others.´

komoriaimi wrote: ´I  had no idea there was a blushing condition and phobia.
I thought it's a cute thing to blush. Who knows when you're the one blushing all the time. This is so strange. Too bad we have such a hard time accepting ourselves and not letting what others think get to us.
This should be a cautionary tale not just to people with the chronic blushing but to everyone, "I'm fat. I'm too skinny, I have a big nose, I'm too pale, I'm too dark, my hair is too frizzy, to straight" etc etc´

Clanki wrote: ´Tragic sure, but like WHAT THE FUCK?! Kids who suicide because they are bullied I can understand (hell I have wanted to die more than once during my elementary & high school years) But because of BLUSHING?! Good Lord! I don't even feel bad!´

DasGine420 wrote: ´ive got stomach issues that make leaving the house difficult because I'm always throwing up and need to be around a toilet almost constantly. if my biggest problem was that i blushed a lot, my life would be so much easier. kid was a complete pussy.´

jobzombi wrote: ´I'm sorry but this is just ridiculous. The only impact his suicide had was on the pavement below. Really? Bulls!@# first world problems. Glad there's a little bit more oxygen for people willing to fight than idiots that need to visit a 3rd world country or just the ghetto in his area. Americans and their stupid problems. Tragic? No way.´

rasnac wrote: ´I am a painfully empathetic (literaly, if I see a person in mildest discomfort, I got cramps in my gut) person, yet I find it so hard to feel any sort of sympathy for this guy. He should have painted his face red and continue his life.´

pixienoname wrote: ´He killed himself because he hated blushing? :O
There are people who go through worser things, yet they're trying to survive. I'm pretty sure the last thing on their mind is suicide.´


alaskanmes wrote: ´The dude deserved it. I knew him, and he was a fucking dick.´

Foat Lux mentioned that rosacea is a very treatable condition and that there are a lot much worse crosses to bear, Ann wrote that her dermatolographia is way worse than rosacea and Vicky wrote why this young woman wasn't prescribed Roaccutane, which has an extremely high cure rate according to her. It cleared hers up in 2 months.


More threads about this topic:









How Antidepressants Affect Selfhood, Teenage Sexuality, and Our Quest for Personal Identity

“Though antidepressants are effective at managing negative emotions, they don’t in themselves provide the sense of meaning and direction that a person equally needs in order to find her way in life.”
http://www.brainpickings.org/index.php/2013/09/11/coming-of-age-on-zoloft/
(picture in gala dress: Covered in make up but sore and burning, I managed to stay till midnight and then washed the make up off and went to bed :(   Felt depressed all night).




More articles and threads on rosacea and depression:

Forum thread Can someone help, I just can't take it anymore. 

Some quotes from this link:

"Hi all -
I am so completely frustrated and depressed with this condition. I have been trying very hard to change my diet to try and reduce the symptoms but still I see no progress. This morning, crying while I was getting ready for work, already in panic about having to go there with my huge pores and red face, I just said to myself "I really don't care anymore...let this disease consume me!" There was a little celebration here at work so I had a very small piece of cake...again becauase I was so tired and just stopped caring! So where am I now....in worse condition then before. I cannot focus at my desk. I am so terrribly upset. It is so hard to see any kind of future with this condition when everyday you don't know what you are going to feel or look like. How do we continue to muster the strength when I just want to say I am done...that I just don't care anymore. Can anyone help?! Thanks."


"I know exactly how you feel. I'm 15 years old and I have rosacea and seb derm. They have both ruined my life. I have seen many derms and tried SOO many products but nothing has worked for me. I started a month ago on changing my diet and I still see no improvement. My rosacea and seb derm have been getting worse. And I cry all the time too. I'm doing online school now because of rosacea since whenever I'm out in public I start crying because I don't want people to see how ugly my face is. I think you should see a therapist, I go to one and she's amazing. And I wish I could give you advice but at the moment I have no strength because of rosacea. People keep on telling me in time things will get better but I've had rosacea for 9 months so far and I want to die. But it's a good thing you found this website so you can talk to other people who are going through the same thing as you. wish you luck! If you ever need to talk, you can message me"


"Hi. This is my first post ever on this site. I was on the keratosis pilaris forum before.Sorry for my English.



Well, this thread is really getting me because I know how do you feel and I know it well. I have rubra faceii (some derm said it was more Rosacea) for nearly 12 years now. I must admit its an ultimate test to sanity. Its started when I was 17, first year of college, the beginning of fun, youth and life. I remember even if its long before, feeling more and more about a pressure in my face (my nose is a little red, but its mostly my cheeks the problem). Than rapidly, I had more and more a red face, starting with hairs growing on my face.
I know there is much worse in the world, wars, genocides, tragedies all this stuff but you are still stuck with that and this condition, is one shit hell.
Except PDL or any type of laser, I mostly tried everything, every cream, diet, even fasting. I don't smoke, very healthy, doing jogging five times a week, training, 5'11, 168lbs. No smoke, no junk foods. Fish oil omega 3, green thea, black thea, everything. Didn't do a thing.
I won't lie that my 20s ending next July, were pretty hell on earth. Its a little better now because after 25, you feel less the crazy explosion flushing. But the permanent redness is there and I feel damages have been done until my death. The worse is on the psychological effect. Even if I can work and feel lucid and rational, there is mark and a real deep wound that will never go away.
The first years were horrible since the flushing was constant. Any social event, meeting, shower, running, putting you're shoes on, masturbation (no joke), the sun, the cold, anxiety, hot room, metro, crowded place, hot drinks, alcohol, shaving, were triggering the heat. It was crazy and in you're mind every second. Its taking hours before going away and you are still stuck with it 24 hours a day. Its invading you're mind like being brainwash, you even fear mirrors, cannot concentrate properly, and you're praying every minute while being with people that the heat won't start or getting worse. The only good time is when you sleep.

I won't waste my time talking about love and social relationship but back than, I became really boiling inside. There is always someone telling you if you're feel hot or how bad was the sun today? It never stopped. You feel first completely out of control of you're life. There is shame, anger, questions and no answers. Mostly in all those years, I felt desperation and oh man, bad toughs are going like a train in you're mind.

And even if someone nice or yourself is saying "Forget it, live with it," everything and I mean everything is giving you back the tough of it in every situation. I was not in the adult world yet. When you are 17-20, people are dumb, impulsive, they don't give a shit about feeling or anything. I even gave a nearly death threat to someone.
I isolated a lot, drink alone like a maniac. I consulted once but I felt it was just the same bullshit (not saying its a bad thing, I know it can help a lot of people and I encourage you to do it).
I even quit university years later, not just because of that, but along with many other factors, one being the accumulation of this constant, dark depression, lost of any power in me. This condition is really taking out you're vitality and without the support of a love that is near you or calling you, you just lost the motivation. You want everything to end.
I won't talk about my life today. Like I said, I am 29, still stuck with that. I kind of let go for some years. I am just tired to the point of not even searching or trying again. I tried meditation, it helped a little, but there are scars in a time that should have been dreams and joy, that are just there. I look to the future, try to forget the past, not that easy since its what you know about the world and life. You only know bad days and bad weeks. Its make you something, construct you're identity.
I tried to just let it go. Sometimes I remember when I was a happy kid, than I this blackout came out. Pain can change someone.
What is hard, is that I really felt I couldn't do anything. I changed my mindset and my behavior. I became very open, funny and gentle with everyone. But being in this world of competition, greed and narcissism, I saw I didn't have my place and I was more annoying than anything else. Indifference mostly was the general feeling. You can be the most honest, loyal, and nice person in the world, if the girl you are interest in doesn't feel anything (and there are ten guys with a white no red and beautiful face around you), even charm and seduction has no power over this condition.
Now, at least being a very cultural and thinker guy (I read a lot in these twelve years, write and became good at conversations and philosophy), I can have some good relations with wiser and interesting people, but that's it. Its just temporary friendship. I really miss good times that I never get or relations that were never possible. And I don't lie. I cannot invent a life that I didn't have or talking about relations or good moments that didn't happen. Again, you feel cheated but also, there is a shame about you that destroy you're confidence and fate about everything in this world.
I will just say to find something that you love, that can become you're island. It could a project. And just let it go. Try a more Buddhist way of not feeling any ego or attachment to yourself. I know its hard, I could not do that until I became very free and more older. I know its impossible when you are young and everything around you is about the look. But try. I am focusing on being calm because hate, pain and anger destroyed too much. Thank you for this, I am happy to know I am not the only one and there are nice people here."

I replied:

"What a very beautiful and touching post.. I can relate with so much you wrote and I think everyone here on this forum reading it will. I think a lot of people with rosacea go through the phases you described. I have the same, after almost 14 years with this horrible condition I also went through anger, desperation, anxiety, shutting off, trying out anything I could get my hands on, becoming indifferent to everything and anyone around me. The worst part for me is the total lack of control, the full impact rosacea has on every aspect of your life and the many things you miss out on and can no longer do because of it. This lifestyle doesn't match with my personality. I also agree that for some, focusing your attention on something you can still actually do and be good at, is one of the ways out of this dark place. It takes a lot of time. For me the first 7 or 8 years were absorbed by trying out creams, treatments, medications, laser/IPL, diets and just fretting about it constantly and finishing university. Only once I found some sort of control back with medication, I could build up some small things that give some meaning and structure again to life, like going for walks when its cloudy and cool or late in the day, picking up work you can do within the rosacea restrictions, patching up friendships again with those considerate and caring about you (generally the long term friends) and stuff like that. First thing should be to find a good doctor and start trying out treatment options step by step. My life is still ruled by rosacea, but I take advantage of the good periods and go out and do things I enjoy then, and I accept the bad periods. It gives a lot more sense of calm and control. Good luck"




UPDATE

There was a story in the newspaper today of a woman committing suicide, after she had a simple mole removed from her face, and ever since had experienced burning pains. She wrote: "Unfortunately I can no longer endure the physical pain of burning flesh in the face, neck and chest."
She blamed her surgeon for causing this. She had the procedure in November 2011. The article says that she had beforehand written to officials in the Swiss clinic Dignitas for help in ending her life. She complained of a 'regular stabbing pain' in her forehead and a face that was often red and painful. Her confidence had been left so damaged she said, that she was unable to leave the house. She also wrote to Dignitas: "I have had enough of this hell and it is time to move on. (..) Therefore instead of facing daunting future prospects fighting with the condition I have now made the most important end of life decision."

Her husband said: "Obviously the impact from the surgical procedure had a huge effect on her and she was only 44. She was getting the odd line or two here and there and she hated it. She was looking at her face every day. She would sit looking in the mirror for half an hour to an hour every single day. I believe the blame is down to the doctors and the clinic and I am going to pursue the clinic for my Victoria. I want justice for her. I'm not bothered about the money side, just as Victoria wasn't. She just wanted to make sure that nobody else suffered like she did. I'm sure if she had had a bit more care and aftercare she might still be here today. Before the procedure she was fine. She was such a bright, beautiful woman." He added: "It was only supposed to be a 25 minute procedure to remove a small mole on her forehead. During the operation she said there was a lot of blood pouring from her head. She didn't think it was normal. A few weeks after the procedure she realized she had been left with a scar. She wasn't happy at all. She presumed it would fade away in time but it didn't. She went back to the clinic to complaint to the doctor. Then the scar started healing, but she started suffering with pins and needles in her face a few weeks after the operation. She kept going back and they didn't want to know. To me I couldn't see much of the impact of the operation. You could see redness in her face sometimes. She said it was eased by a hot shower so she was always showering and putting creams on her face. She said she was in a lot of pain. She described it as a burning sensation on her face and neck and she would sit there with her head in her hands and her eyes closed.


"As time went on she became more and more determined to get back at the doctor. She would say "I'm oing to get that b******. He has wrecked my face." She didn't want other people to go through what she was going through. She was always writing letters to different solicitors. She wanted to sue on the grounds of medical negligence because she believed she had suffered nerve damage. It went on for over two years. She became very reclusive. She started reading the Bible a lot and wouldn't go out anywhere. She didn't want to see anyone. She never gave any other reason than her face and became a completely different person. Then she started talking about suicide. She would say "I've had enough, I can't cope anymore. I'm going to kill myself." I didn't know what I could do to help."

A spokesman for Transform Clinic said: "The treatment we provided in November 2011 was of a high
standard and this has since been corroborated by other independent medical professionals including her own GP. Following treatment, we had extensive correspondence with Mrs. Meppen-Walter. It was apparent her issues were deeper rooted than with the actual treatment and care we provided. patients concerns and after care are paramount to us and we are very saddened by this tragic news."


What a very sad story.Its impossible for the reader to determine how severe her facial pain really was. And how much of her distress was the result of the cosmetic side of it, and the lack of control. But this is how a lot of people with rosacea feel as well I think. In daily pain, with burning faces. It reminded me a lot of the reaction from the horrific and dreadful Dr. Mervyn Patterson from the Woodford Clinic in Danbury, UK. He used an old IPL machine on my face, absolutely ruined it and I am still, 8 years afterwards, a lot worse rosacea wise than I was prior. He ruined my life afterwards and was the most uncaring, rude person ever when confronted with what he did. I can't believe this crook was awarded Best Aesthetic Clinic of the Year... See video here. His wife even says in the thank you speech: "we have happy costumers and that's the way we like it to be." The irony. You can read more about his nightmare of a treatment and attitude here, in a previous post. Please people be careful when you do rosacea treatments involving laser and IPL.

Video's on Dr patterson: video 1, video 2. Lets hope he sticks with fillers and botox from now on and stays away from rosacea patients. (Link)












8 October 2013

Article on anxiety induced skin problems and burning:

Anxiety That Provokes Burning Skin

Scientists are only now starting to understand the way the mind affects the body. Many of those that suffer from serious anxiety and anxiety attacks experience a burning sensation – a feeling of burning skin that can be frightening.
That burning sensation really can be a symptom of anxiety. It may occur with or without an anxiety attack, and it may even be associated with skin flare ups.
[..]

Causes of Burning Sensations in Skin

When you experience anxiety, your body is in fight or flight mode. That causes a rush of adrenaline as your body prepares for "action." Adrenaline affects people in different ways. Some people experience more of a weakness or a tingling. Others experience a burning sensation all throughout their body.
This is your entire body responding to the increase in energy. It's a normal part of anxiety attacks, and may occur even when no attack is present.

Burning on Areas of the Skin and Skin Disorders

Anxiety also causes the skin to be more sensitive. Because the skin is sensitive, it may be prone to skin reactions with no discernible cause that lead to issues like itching and rash.
Anxiety also creates a great deal of stress, and stress can trigger skin disorders that were already present, such as eczema, herpes, and psoriasis. These skin disorders may cause a burning feeling. In these causes, anxiety would not have caused these skin disorders, but may contribute to them.

How to Stop the Burning

You can't turn off your adrenaline. If you're in the middle of an anxiety attack and it's causing your skin to burn, you need to wait it out. But you can control your anxiety.
The best way is with prevention – using anxiety reduction techniques to keep your anxiety and anxiety attacks from occurring, and the burning feeling will go away.
Also, while you're suffering from anxiety, use traditional relaxation techniques to calm yourself down. Deep breathing and visualization are both very effective, and can keep your anxiety from becoming too stressful.









And there has been written a good article in the RRDI website about rosacea and its psychological impact:

Rosacea And Psychology



RosaQoL is one of the first QoL reports on rosacea.
One report done in 2002 on this subject puts the matter clearly, "Dermatoses may have a significant impact on a patient's quality of life, namely the relationship to others, self-image and self-esteem.' The same report concluded, "Improvement of quality of life reached statistical significance among patients with acne (2.8 versus 7.8, p = 0.0078) and among individuals with a less severe initial impairment of quality of life (2.4 versus 4.2, p = 0.007)."

It has been stated that in "some cases, rosacea patients are so psychologically disturbed that that they may be unable to form a therapeutic alliance with their dermatologist or other skin specialist. In such cases, psycho-tropic medication and/or psychological therapy are essential."

Another source says, "The problem is that many dermatologists are operating in the dark when it comes to how badly rosacea might be impacting their patients' quality of life."

However, another report says just the opposite, and states, "In treating patients with rosacea, we are well aware of the psychological effects of this disease, and the depression, anxiety and social isolation it can cause," but both reports substantiate the psycological factors.

No one likes to think that rosacea is all in our mind, yet, there is evidence that at the very least your mind can aggravate this disease. Could rosacea have a psychological factor? One report says, "Recalcitrant dermatoses may be a manifestation of a symbolic transition object. Psychologically, the patient uses his skin eruption to assure himself that he is a separate person with his own boundaries."

A whole field of medicine, psychodermatology or psychocutaneous
medicine, addresses this aspect of rosacea and how experts in the field may be of help to some rosaceans. One article on the subject encourages health care practioners to consider their role in the treatment of a skin disease saying, "Quoting W. Mitchell Sams, Jr., 'although the physician is a scientist and clinician, he or she is and must be something more. A doctor is a caretaker of the patient's person--a professional advisor, guiding the patient through some of life's most difficult journeys. Only the clergy share this responsibility with us.' This commitment is and must always be the guiding force in the provision of comprehensive and compatient patient care." 

This is very important to a rosacean because if a physician is not trusted then this can have a detrimental effect on treatment. Note what this article pointed out:

"If the dermatologist allows the contemptuous patient to use his disdain to discredit him, the patient loses, for he can no longer respect his doctor." If the physicians 'bed side manner' is not respected by the rosacea patient this can damage the treatment. Many rosaceans complain how physicians seem to have little compassion for their problem or little time to listen, moving quickly on to the next patient, sending a message of disinterest in the individual's feelings. Trusting your physician or treatment has a huge impact on whether the treatment works. When rosaceans find a treatment doesn't work and this happens over and over again, depression can set in and disappointment in a health care practioner, treatment or regimen can be affected. This can add stress to an already frustrating emotional mental state triggered by rosacea!

One study showed that "patients who were prescribed combination therapy had significantly greater improvement than those who were prescribed azelaic acid gel alone," which was a study designed "to examine both the short-term clinical efficacy and quality-of-life changes resulting from treatment of rosacea with regimens that reflect the participating physicians' standards of care while incorporating azelaic acid gel." 


Another psychological effect not to underestimate is the placebo effect, which has been researched extensively. One paper says, "Potential biological mechanisms for the placebo response are discussed, including the possibility of genetic predisposition to be a placebo responder." While this editorial doesn't go into the placebo effect, this often misunderstood mystery is worth mentioning here since it is a psychological factor in rosacea. More on the placebo effect. Pascoe's article on the Placebo Effect is worth reading.

Several research papers conclude that emotional and psychological factors are involved in skin diseases. One report done in 2005 says:

"CONCLUSIONS: (1) Patients with rosacea in the period before the occurring of first symptoms of the disease, comparatively with persons from the control group, they experienced the bigger number of critical life events. (2) The stress intensity resulting from the number of critical life events, is significantly higher at sick people in the relation to the control group. (3) At patients with rosacea emotions resulting of the estimation of the primary stressful situation tightening symptoms of the disease. (4) The subjective estimation of patients' health is essential predicate of psychodermatological therapy releasing potential health possibilities at the patient."
Another report in 2005 about quality of life says, "Change in Investigator's Global Assessment score, measuring the severity of rosacea symptoms, from baseline to follow-up, and change in scores on the RosaQoL, a rosacea-related quality-of-life instrument with 4 component measures (Overall, Emotion, Symptom, and Function) completed by patients at both baseline and follow-up. RESULTS: Over the course of treatment, the mean Investigator's Global Assessment score dropped from 3.52 to 2.10 (P < .0001)."
One report in 1986 on anxiety and skin problems said, "The test results proved a marked correlation between psychological factors and the activity of the adrenergic system. High level of activity, emotional unstableness, as well as tendencies to neurotic activities are connected with increased secretion of adrenaline and decreased secretion of noradrenaline++ and dopamine."
There is one report of a young man who committed suicide due to his not being able to deal with blushing.
Vicky Norfolk threw herself off the Humber Bridge because of her rosacea. 


A report concluded, "In all groups of patients partial correlation between the examined determinants of psychological and subjective assessment of symptoms and effects of its treatment was shown. The higher rating of the variables was most associated with a higher intensity of stress and anxiety."

I found this interesting quote which appeared in an article published in 1886, "The depressing effect on the mind of the patients produced by the steadily lasting eruption, kept up by the thought that the disease was incurable, and thought upon by others as possibly venereal, has frequently been noticeable. I fully believe that patients with this disease suffer, in mind, at least as greatly as those afflicted with the most serious maladies, not even excepting smallpox. I have known patients to lock themselves from the gaze of the world for months, to forego all society pleasures, to become as treatment after treatment failed, as physician after physician gave up the case, utterly despondent of ever becoming rid of their tormenting malady."

A new subtype has developed called, Neurogenic Rosacea which is related to this subject.

 And: Anxiety structure and catecholamine parameters in patients with rosacea, alopecia areata and lichen ruber planus







The Mind-Skin Connection

Does stress cause your acne or rosacea to flare up? Or do you chew your nails to the quick? Experts say emotions can have an impact on your skin. (link)

Any time Amanda feels nervous, she breaks out all over her 13-year-old face. Jeremy often feels so sorry for himself that he has eczema that he shuts himself off from the world during bad flares. And the only way that Kim can stop her obsessive thoughts is by pulling out her hair.
In these and many other ways, the mind and the skin are intimately intertwined. You name it: acne, eczema, hives, rosacea, psoriasis, alopecia (hair loss), vitiligo (depigmented white spots on the skin), trichotillomania (hair pulling) and self-mutilation disorders, many skin disorders take their roots from or place their roots in the psyche.
Experts are calling this new field "psychodermatology."
"Psychodermatogy is a field that addresses the impact of an individual's emotion as it relates to the skin," says Karen Mallin, PsyD, an instructor in the departments of psychiatry & behavioral sciences and dermatology & cutaneous surgery of the University of Miami/Jackson Memorial Hospital in Miami.
"I think [psychodermatology] is going to be growing by leaps and bounds [because] dermatology is ready for a more integrated approach with other fields such as psychology, psychiatry, and even complementary medicine," says Mallin, who recently completed a postdoctoral year in psychodermatology at the same hospital where she now works. Such an integrated approach allows for new treatment possibilities including antidepressants, relaxation therapy, or counseling that can alleviate the mood problems that result from or cause skin problems. [..]
"The mind and skin are connected on many different levels," Mallin tells WebMD. "A lot of nerve endings are connected to the skin, which wraps around the organs, so as emotions are played out neurologically, they can be expressed through the skin just as stress can be expressed through gastrointestinal symptoms, increased anxiety, or hypertension." Take acne, for example. When you are tense, your body releases stress hormones including cortisol, which may increase the skin's oil production, making you prone to pimples.
And, Mallin says, "in some autoimmune diseases such as alopecia (hair loss) and vitiligo, scientists now show markers that a stressful event can trigger the autoimmune reaction. "If appearance is impacted due to a skin condition, you can end up having to deal with self-esteem issues and social stigma, which, if unaddressed, can lead to depression," Mallin says. "If they truly have depression or a diagnosed anxiety or psychological disorders, medication can be helpful and so can a brief course of cognitive behavioral therapy that works at changing reactions and behaviors," Mallin says.Relaxation training can help as well.
[..] [During development in the womb], the brain and skin are derived from the same cells, so there is a connection," she says. "And the other immediate relationship is that when people experience stress in life, quite frequently, their skin becomes a reflection of the stresses."  











This is an article about a young guy who took his life. His sister recalls how he was very distressed about thinking he was losing his hair (link). He seemingly had it all but had underlying mental struggles.




26 October 2013

Saw a great interview with Ruby Wax about her depressions last night. Everything is in English apart from the first minute intro in Dutch. Both funny, enjoyable and interesting.









19 December 2013
I think I missed this rosacea thread, when I wrote this post.

Nick wrote on May 31st 2010:

I Know I'm going to commit suicide over this...
"It's only a matter of time before I kill myself, because of the way my life has turned out due my Rosacea. I already know, certain infact, that I WILL NOT die of natural causes an old man - and I'm strangely at peace with that. I will most likely die from committing suicide, and I've recently told my Mother this. She got upset, but I wasn't going to lie to her and sugar-coat the way I feel. But I did promise her that if I ever did kill myself, it would only be AFTER she'd already passed, sparing her the pain of losing a child. I'm 25 years old, I feel slot older and drained in both body and mind. I feel ugly, uncomfortable in my own body and mind. It never ends. 10 years ago, back in school, I was such a happy-go-lucky kid, full of ambition and plenty of dreams for the future. How things change to absolute shit. I hate my face, Rosacea truly is a fucking curse which destroys your very being, confidence and mentality. It brings alot more with it too - social phobia, depression, pure rage towards yourself and the outside world. How those pretty people out there with their perfect clear faces take it all for granted."

MarkH replied: "Hey there mate. Iknow exactly how you feel. I to am 25years old and i've been suffering from rosacea since i was 15.When i was around 18 and all my friends were going to uni,i got really low and depressed as my rosacea held me back from going.There was atime when i thot ididn't want to live another 60 odd years if iknew id never be happy. I used to say id prefer to have cancer because at least u eitheir got treatment or you dont.It was the uncertainty of never knowing if id be cured that really annoyed me. But here i am 7years later and im certainly glad i never followed through on my thoughts.Im by no means as happy as icould be but im definetley 100times happier than i was.It is hard to stay positive but you just need to put more thought and effort into things. For instance on the days when my rosacea isn't as bad i just go out and do things.Go shopping and meet my friends.But then i might have afew bad days in arow and ill just watch afew films on dvd or play my xbox.The hardest thing is when your feeling ok and someone says something cruel and it puts you right back low again.Don't get me wrong i still get annoyed when drug ridden wasters walk past me with clear skin and i think how could people waste their life when id give anything to have normal skin but if ididn't have rosacea,id just have another dozen imperfections id hate like everyone has."

MissD gave the number of a suicide hotline and added: "Rosacea is nothing to kill yourself over."

There are many more replies from other forum members to be read here.




Portcharles wrote in 2007: "Rosacea is giving me thoughts of suicide? 
I have rosacea, had it all my young life, two months ago, i got a mild sunburn and now my face &cheeks and nose) are permanetly red. I look like I have a sunburn and I have red lines. i am a 30 year old female. Divorced with no kids. I have not left my house in days..I can not even work. I have tried everything (antibiotics, creams nothing works....I feel like killing myself...my reflection is soooo ugly. I have lost sooo much weight because everything is a trigger...I have no friends only a mother who has lost hope on me.."






This is an article about Social Issues Related to Rosacea:
Some quotes:

"Although most governments regard rosacea and other skin disorders as mild ailments, there is credible evidence that this classification is wholly inappropriate. Contracting rosacea will have adverse effects on the life of the sufferer, and this is something that must be looked into. Rosacea should never be taken lightly because it can cause disability just like asthma, bronchitis and angina normally do. In addition, rosacea and other skin diseases can have significant effects on the family of the sufferer as well as on the career of such people. Although many people take this disease lightly, many sufferers have said that they suffered psychologically and were even isolated socially."

"Another thing is that people affected by rosacea face the prospect of being discriminated against because of their appearance. This can in turn lead to such people withdrawing from social activities. For instance, they shy away from attending social gatherings such as parties, being photographed and are reluctant when it comes to meeting new people."

"When it comes to career choice, rosacea sufferers are limited in terms of what career they can choose."

"People suffering form rosacea are also at risk to develop other psychological problems, and these problems are likely to stay even after the situation has subsided." (Uhm... for most they don't subside). "Such people should be attended to by psycho dermatologists who can help them to erase the effects of scars left by rosacea."

"According to American Academy of Dermatology, one of the main results of rosacea and other skin disorders is major depression. People with this skin disease tend to think of suicide as a means to ending their suffering."

"Studies show that people who suffer from rosacea have no option but to change or stop their normal daily activities. These people also face high chances of never being employed due to widespread discrimination by employers."







This article is about the Burden of Disease and the psychosocial impact of rosacea on a patients quality of life.
Some quotes:

"The facial skin manifestations of rosacea have significant implications on patients’ well-being and social and emotional health."

"The clinical severity of rosacea does not correlate with the level of psychosocial distress experienced by the patient. This psychosocial impact has been documented with studies reporting increased depression rates among patients with rosacea.30,31 One analysis revealed that 65.1% of patients with rosacea who had a comorbid psychiatric diagnosis also had a diagnosis of depression. This is a much higher proportion than the 29.9% prevalence of depression reported for all psychiatric patient visits. A survey conducted by the National Rosacea Society with more than 400 patients with rosacea revealed that 75% of respondents reported that their rosacea had lowered their self-esteem. In addition, the majority of respondents reported that their rosacea made them feel embarrassed (70%) and frustrated (69%). More than 50% of respondents reported that they felt robbed of pleasure or happiness because of their rosacea."

"Patients with rosacea are affected by emotional and social stigmas, including being viewed as abusers of alcohol or as having poor hygiene. One survey conducted by Kelton Research evaluated patients’ self-perception and the perception of others regarding patients with rosacea. This online “perception survey” contrasted images of women with and without rosacea. More than 1000 members of the general population and 502 women with rosacea completed the online survey between October 29, 2009, and November 9, 2009. Women with rosacea were perceived to be more insecure, not as healthy, not as intelligent, and not as successful as women with clear skin. Overall, respondents with and without rosacea had negative first impressions of women with rosacea."





And below this article is another article cited:


Stakeholder Perspective
The Psychosocial Impact of Skin Disorders: Time for a Closer Look?

Matthew Mitchell, PharmD, MBA
Manager,
Pharmacy Services SelectHealth,
Salt Lake City, UT

"Several studies and patient surveys have zeroed in on the psychological distress, social stigma, and reduced quality of life that are characteristic of patients with rosacea.1-5 Moreover, a small study has documented 16 patients with dermatologic conditions, including acne and rosacea, who committed suicide after presenting to their physician with skin problems, prominently facial skin disorders,6 shedding light on the potential for severe depression that could accompany a chronic skin condition, which nevertheless is often being misperceived as mainly a cosmetic problem.









January 9th 2014

This article in The Independent, all the week back from 1997, heads:
 "Skin diseases drive sufferers to suicide. 
It mainly reports about sufferers of skin diseases as acne, psoriasis and scarring, but given the extreme impact rosacea can have on patients (including their every day life, by avoiding endless triggers) and the pain, stress and anxiety it causes, being a progressive disease without proper treatment or cure, it is reasonable to assume that there have been more than the few cases highlighted above in this article, who ended their lives over this.
 
"Doctors have warned that skin disease can be a hidden killer after one treatment centre found that 16 of its past patients had committed suicide. The two doctors who carried out the research into suicides among former patients say that skin disease should be accepted as a cause of suicide, and that rationing of a drug to treat acne may result in some patients who cannot get it killing themselves. Britain's use of isotretinoin, the most effective drug against severe acne, is one of the lowest in the western world, only one-fifth that of France.

Professor Bill Cunliffe, a leading authority on acne, and co-author of a report in the current issue of the British Journal of Dermatology, says that acne and facial scarring can cause deep depression.
"Our message is that it causes a lot of psychological and social effects, with low self-esteem, job discrimination, employment problems and interpersonal problems, and that there are people who will take their own lives as a consequence," he says. The report says that research has shown that one in 10 psoriasis sufferers have a deathwish, and adds that there is a considerable risk of suicide in patients with acne. The Leeds research into the deaths of former patients is believed to be the first of its kind. No national figures are available on suicide among dermatology patients, but both suicide rates and the incidence of some types of acne are increasing. It is estimated that about 5 per cent of acne sufferers are severe cases and suitable for isotretinoin, an oral drug which is a vitamin A derivative, marketed as Roaccutane by Roche, and which costs about pounds 500 for a four- to six-month course of treatment."It is extremely effective and can virtually guarantee to get rid of acne after about four to six months with about a 70 per cent likelihood of a long-term cure. It suppresses all the factors that cause acne. It reduces grease, blocked pores, bacteria and inflammation," says Professor Cunliffe, professor of dermatology at Leeds General Infirmary.


The report in the BJD warns of the dangers of the health service not funding drugs for acne and other skin conditions. It says: "Funding problems in regard to provision of this drug could have potentially fatal consequences. Most hospitals have funding problems, producing a rationing of acne care which is clearly undesirable."
Acne patients also face discrimination, says the professor: "There are all kinds of discrimination against people with acne. Unemployment, for instance, is 45 per cent higher among people with acne. I have had two young patients this week who have not been to school for six months because of acne.
"In our report we emphasised the need for the early use of isotretinoin to control inflammatory acne and lessen the scarring. It is expensive but it is cost-effective in the long term because you only need to treat for a limited length of time."Britain lags behind most of the rest of the world in the use of the drug. In the USA, Canada, Australia and Sweden, for example, usage per head of the population is twice that of the UK. It is estimated that only around 1 per cent of acne sufferers in the UK who consulted their GPs are offered the drug through the NHS, but that three times as many could benefit.Noel Rabouhans, Roche product manager for Roaccutane, says: "Roaccutane is an effective treatment in patients where conventional antibiotic therapy has been unsuccessful, but unlike other acne treatments it cannot be prescribed by a GP, only by a dermatologist. As a result the hospital picks up the bill and it is a prime target for cuts when the NHS is looking for savings.
"One of the problems is that there is a notion that acne is a trivial complaint, but, as the report shows, that is very much not the case."Acne is precipitated by the male hormone testosterone which encourages the sebaceous glands in the skin to produce increasing amounts of sebum, an oily substance whose job is to lubricate the skin. Over-production of the oil is usually found in people who have acne and it leads to blockage of the hair ducts.In mild forms, the pores scale-up, resulting in blockages, which materialise as the classic blackheads or whiteheads caused by dead skin cells and sebum collecting in a pore.In more severe cases, the pore loses its structure and ruptures, and the bacteria-carrying oil gets into the skin tissue itself, causing the red inflammation typically seen in sufferers with severe forms of acne.


A catalogue of deaths that might have been prevented

The report details the cases of the 16 patients who were referred to Professor Cunliffe and a colleague, and who subsequently killed themselves, over the past 20 years. The average age of the acne victims was 20, with the youngest, two teenagers, aged 16 and 17.
 

The deaths included:
-A 31-year-old woman who was desperate for treatment with isotretinoin, but "the drug was not available when she presented because of the budgetary controls in the NHS". She became so depressed that she killed herself.
-A 26-year-old woman who complained of excessive facial hair and thinning of the scalp hair who threatened to kill her doctor, and later killed herself by jumping off a block of flats.
-A 51-year-old unemployed woman suffering with psoriasis who set fire to herself in her own bed.
-A 57-year-old woman who had delusions of parasitosis and who stalked her doctor. She eventually suffocated herself.
-A 71-year-old man who had psoriasis and who threw himself in front of a train.
-n A 23-year-old man with facial scarring from acne who failed to respond to treatment.
-n Six other acne sufferers who killed themselves, all but one using an overdose. They were aged from 16 to 24."





This is a terrible and distressing letter a skin disease patient
wrote on a forum
(LINK).
Some quotes:
"I have suffered for every second of every minute of every day for over 10 years with a terrible skin condition that has left me permanently disfigured, in terrible physical pain, and emotionally destroyed. I have widespread infections over my entire body skin that peels and flakes off ever square inch of skin that I have. My face is covered with seborrhea and acne and it is full of deep scarring. My hair falls out in clumps, is covered in sebacious cysts and the most severe dandruff you could ever imagine. Im 29 years old and I have never been in a relationship. I'm totally humiliated every moment of the day. I look like a dying aids patient. My shoulders, back, chest, arms are covered with infection, boils, scars, scabs, and thick peeling and scabbing skin.
[..]
I have suffered for every second of every minute of every day for over 10 years with a terrible skin condition that has left me permanently disfigured, in terrible physical pain, and emotionally destroyed. I have widespread infections over my entire body skin that peels and flakes off ever square inch of skin that I have. My face is covered with seborrhea and acne and it is full of deep scarring. My hair falls out in clumps, is covered in sebacious cysts and the most severe dandruff you could ever imagine. Im 29 years old and I have never been in a relationship. I'm totally humiliated every moment of the day. I look like a dying aids patient. My shoulders, back, chest, arms are covered with infection, boils, scars, scabs, and thick peeling and scabbing skin
[..]

I'm sick of being in terrible burning and itching pain every moment of the day. I'd rather have no life than to be stuck in a life of constant misery.
Nonexistence wasn't too bad before I was born, so I am ready to be eternally non-existent. This life didn't work.Sometimes I think that there is no other choice. Over 10 years spending every moment researching, trying treatments, going to see specialists with borrowed money. Every year goes by and the condition rages on the same as ever.

Holistic healing has failed me.
Alternative medicine has failed me.
Hope has failed me.
Faith has failed me.
Life has failed me."











January 14th 2014

I just read the obituary of a Welsh woman, Frances Medley, 44, in The Guardian, who suffered from MS since 2005 and found the pain, life restrictions (giving up on her academic job for instance) and the outlook on more detrioration too much to bear any longer She wrote a blog about her final decision:

Musings of a Contemporary Spinster.

Her friend Gilly Adams wrote her obituary and mentioned:
"The formidable reputation that she developed made her much in demand when she subsequently embarked on a freelance arts career. She worked as a consultant, mediator and facilitator, and rescued a number of arts organisations from disaster through her wisdom and hard work. There are many artists, dancers, theatre practitioners, writers and others who owe Fran a huge debt for her generous and unstinting support.

Eight years ago, Fran was diagnosed with multiple sclerosis and, while she continued to work, her life gradually became unbearable to her, because of the loss of freedom and independence. Fran had an alter ego, the Sophisticated Spinster, who featured in her blog, Victorious Endeavours. The Spinster displayed a keen sense of the absurdity of daily life. She kept her illness at a distance by christening it Cruella and transforming some of Cruella's worst antics into wry and funny blogposts, albeit with a bleak undertone.

It was important to Fran for people to understand the crucial distinction she made between suicide and ending her life at a moment and in the manner of her own choosing. She made a 10-minute film, An Explanatory Statement, which was shown at her wake, and also left a final blogpost, under the heading A Sophisticated Sign Off








In this last blog entry, Frances wrote (these are just some quotes of all she wrote):


"Well dear readers the Spinster has decided to call it a day; Cruella has simply exhausted me emotionally and physically. The prospect of further rapid deterioration was both terrifying and not one I wanted to entertain. The Spinster decided to end her life in a manner and at a time of my choosing; I am very clear that, whilst the law might say otherwise, I AM NOT COMMITTING SUICIDE.

It has been just over 8 years since the Spinster was given the unwelcome gift of a chronic incurable degenerative disease; one that would destroy my life slowly at first and then in leaps and bounds. In just over 10 years this Spinster went from being a higher rate tax payer responsible for running a public body – (as an aside I believe I was the youngest woman to do this at the age of 30) – to a position last year where I didn’t earn enough to pay tax. The loss of my independence both financially and physically has been extremely difficult for me. Without the financial support of my immediate family I would have had to seek the support of the State; whilst of course I was entitled to resort to this I found the prospect humiliating.  Pride is a terrible thing; a real burden at times of need.

The Spinster fortunately peaked early on life and so I don’t leave with rafts of regrets or things I wish I’d done. Happy with my lot is perhaps an exaggeration but had the Spinster persisted my ability to do things would have been daily reduced; my potential it seems has been fulfilled.
"


Some studies about rosacea and mental illness on Truthly.

Patients with rosacea had a higher rate of depression and anxiety, especially men, based on a correlational study. .
and
Long term lithium use was associated with a significantly decreased risk of rosacea, based on a correlational study. Independently, people diagnosed with schizophrenia were less likely to have rosacea..







June 15th 2014

I read an article of the online version of Rolling Stone magazine two days ago, where a singer called Lana del Rey said in an interview that she has been dealing with a mystery illness the past year and that at times (often) she wished she was dead. I usually don't respond to user comments below such stuff but this one was different I guess. I felt this was a typical, stereotypical view and response of so many people out there on depression and illness. Slacking people mentioning it off as attention seekers, whiners, sad cases and ungrateful spoiled types. So many of such responses, backed up by so many normal looking readers, and those trying to hammer some sense or morals into them are dismissed as sad cases too of course :) With too much time on their hands. Anyway, here is an abstract of the discussion. I know many rosacea people who encounter this same prejudice and vindication about their own illness and depression, and although people never say it to my face, I know that some family members and acquaintances of mine have low opinion of me too, because I let my face 'dictate my life'. It usually seem the types of people judging others, who either had flawless lives themselves, are blessed with a very sunny character and absence of any illnesses, or those who previously had a hard time but managed to overcome whatever hurdle they faced and now want to push their attitude and approach onto others.On the other hand, I know it might also be a tongue in cheek effort, to ridicule the article and life itself a little bit with seemingly shocking comments. If they had been funny, I guess it would even be bearable, but the selection below sounded rather serious for some reason.




Below the article, an on the comment section on facebook, people really went loose.

By Kory Grow
June 12, 2014 6:50 PM ET

Lana Del Rey wants to die so badly, she wishes she was already dead, or so she told British newspaper The Guardian. When the subjects of Kurt Cobain and Amy Winehouse came up during her interview, and the newspaper connected the two by their deaths, Del Rey – whose breakthrough album was titled Born to Die, she proclaimed her death wish. "I don't want to have to keep doing this, but I am," she told the paper. And by "this," she said she meant "everything." "That's just how I feel," she said. "If it wasn't that way, then I wouldn't say it. I would be scared if I knew [death] was coming, but. . . " The rest of the sentence did not make it into print. [..] Thttp://www.ns.nl/hese pallid revelations comes shortly after Del Rey revealed to Fader that she had been suffering what she called a "medical anomaly that doctors couldn't figure out" in early 2013. "That's a big part of my life," she said. "I just feel really sick a lot of the time and can't figure out why."


From the original interview:
"I wish I was dead already," Lana Del Rey says, catching me off guard. She has been talking about the heroes she and her boyfriend share – Amy Winehouse and Kurt Cobain among them – when I point out that what links them is death and ask if she sees an early death as glamorous. "I don't know. Ummm, yeah." And then the death wish.
Don't say that, I say instinctively.
"But I do."
You don't!
"I do! I don't want to have to keep doing this. But I am."
Do what? Make music?
"Everything. That's just how I feel. If it wasn't that way, then I wouldn't say it. I would be scared if I knew [death] was coming, but …"
[..]
We're in New Orleans, a city not known for peace and quiet. A couple of blocks from Lana Del Rey's hotel lies Bourbon Street, the scene of drunken rampages from morning till night. Head in the opposite direction and you can expect to be assaulted by the vibrant brass of the French Quarter's street jazz musicians. Even inside Del Rey's elegant suite there is carnage: suitcases half-exploded; bags of corn chips strewn across the floor. Even her laptop has been doused in tomato ketchup, temporarily thwarting our attempts to hear songs from her new album Ultraviolence. "Ewww," she says, baffled as to how a condiment could have found its way inside the power socket.
And yet when we move outside to sit on her balcony, the scene is transformed into complete calm. "This place is magical," she says, sparking up the first of many cigarettes. So serene is the setting, in fact, that it takes me by surprise when Del Rey begins to tell me how unhappy she is: that she doesn't enjoy being a pop star, that she feels constantly targeted by critics, that she doesn't want to be alive at all. "Family members will come on the road with me and say: 'Wow, your life is just like a movie!'" she says at one point. "And I'm like: 'Yeah, a really fucked-up movie.'"
Throughout our hour-long conversation she keeps returning to dark themes. Telling her story – a remarkable one that involves homelessness, biker gangs and being caught in the eye of a media hurricane – also involves working out why a songwriter who has sold more than 7m copies of her last album, Born To Die seems so disillusioned with life.



These are some of the comments people felt free to post in response (and this negative dribble made up the majority of feed back unfortunately):

"Stephanie: What a fucking idiot. Maybe she should take a trip to a hospice and speak to people who are actually dying, and then she'll learn to appreciate the simple gift of life. Or step in front of a bus. Makes no difference to me."

"Joanne: What an idiot! She's an attention whore. I seriously hope kids and teens realize that she is NOT someone to emulate!"

"Stephanie: Sooo..why is she still alive?. I mean surely if the desire is that overpowering she couldve arrange it..pay some someone to kill her or even commit suicide..this is just a charade.. now she is annoying.."

"Dana: What a dumb bitch too say something like this."

"Ryan:  Crazy bitch!!! Hahaha, just do it!"

"Kelly: She's disgusting .... There's people , young and old who are fighting for their lives due to an illness or accident ,,, and this Bitch wants to die ??? Do us a favor ...
Quit your whining and just do it."

"Taylor: She's an untalented spoiled rich kid. She's not mentally ill. She SHOULD kill herself for making fun of real issues."  

"Stacy: How fckn stupid. I can't believe how much space is wasted on this shit. You want to die? Go away and do it quietly you stupid bitch, why do I have to read about it?"

"Sagan: If she wishes she was dead she should blow get brains out."

(In response: "Fiona: You're disgusting, and clearly know nothing about living with serious illness and depression. Absolutely vulgar to suggest anyone blow their brains out. Go spend some time with the chronically ill and get over yourself.")

"Libby: Someone give this ungrateful woman a grip of heroin n a needle."

"Deb: Stop talking about it and just fuck off and die already. Can you say "I wanna be the center of attention ALL OF THE FUCKING TIME" (in a bitchy, whiney voice, of course)? Hmm?"

"Ashton: Attention whores. Cant handle reality."
"Ryan Seville Clearly she is a fucking wrong un no one cares about your problems so Man up or shut up"

"Stefanie: If she wanted to be dead already she would be !!!! She's a whiney bitch.."

"Karlo: It makes me angry how she so openly and unshamefully glamorizes young death and addictions and depression just to emphasize on her "sad" persona. I have no sympathy for people who get the opportunity to live a dream and still complain. If she hates being a singer so much, just stop? I love her music but this threw me off really bad. Disgusting message to pass on to the media knowing it would be made public."

"Ken: fook off and die then"

"Sophia: Our world is about to get destroyed by terrorists and we're worried about this girls depression. You know how many kids our depressed in our country?? Nobody cares about them! Why not tell this young beautiful talented woman to start steering positiveness so she can influence our children today and raise awareness in an area that she can influence (younger generation) so that our America stops deteriorating. In turn, her power will lead to a stronger America and trust me, that'll put a smile on her face. She would save herself, our children and the start of saving our country. Public figures are very influential, we need them just as much they need us. Sorry, I know she has problems but so do I and so does the rest of the world... Only difference is she has the ability to make a difference!"            

"Damon: What a spoiled little turd. People would kill to be in her shoes. Stop being so self centered!"
"Coincidentally, most people who hear her music feel the same way"
"So basically, her PR team decided she should manufacture a darker persona, as it would be more beneficial to her overall image. Got it."
"If she kills herself because of internet cynics, she's too weak of a human being and doesn't deserve to be here in the first place."
"So, by any means, do us all a favor already."
"Singer reveals dark thoughts? Hahahaha! More like desperate for attention. Just check out some her song titles on her new, boring album: "Fu@ked My Way Up to the Top", "Florida Kilos", "Brooklyn Baby". Yup, desperate for attention!"
"Hurry up then! And I will not illegally-download your posthumous recordings either!"
"To be honest RS, its pretty dangerous to put something like this out there for a younger audience and equally an older audience to read because it may encourage self destructive behavior because some people who are in a dark place look up to people like this. I don't know if its her trying to do the 'pop noir' persona or what but its a really negative thing to put out there. A rich musician wanting to die, how cliche."
"Use your money to take some prozac, have some therapy and cheer the f*ck up then. Make happy music. Then you will be happy. Simple. Problem solved."
"If it's because of a chronic pain issue from her "medical anomaly" I can sort of see it...if not, and it's spoiled dark rock start attitude, all I can say is..... awwwwwww weep weep weep....a depressed music star just off yourself already then! Try being a freaking person working in a cubical or a waitress if you want to off yourself."
"If a person really wants to commit suicide, they don't go around telling everyone about it, sadly, they just do it"
"All I get from this is a woman utterly desperate to be seen as a dark romantic heroine, aligning herself with far more accomplished artists who really did have a dark side. She is an insufferable phony with a fake name and fake lips. Flash in the pan who is trying to seem like more. I don't buy any of it."

"Jenna:Wow. This is what an overly privileged childhood does, she can only see herself there's no one else. 100% narcissist"

"Adam: So just freaking kill yourself you whiney c word.

  Carmine:I would hope if a loved one approached you saying the same type of things you wouldn't tell them to "just go freaking kill yourself" as well.

    Adam: Well there Carmine, somehow I don't presuppose my loved one would be so terribly unfortunate as Ms. Del Ray, to be having a financially successful artistic career. (at such a young age nonetheless!) If my loved one were having similar "problems" as our heroine, I'd tell her to STFU and go volunteer your time in a third world country, or if that's too much an investment on your "woe is me" moan time, then at the local pet shelter. F sake.... Yes, such deep, deep pity I have for this attention seeking windbag.

    Carmine:  So you don't understand what actual medical depression is, which answered my question. Thanks

      Adam: Right, because when you completed your research on my family's medical history, you didn't find any of that. You're very welcome Carmine.

    Carmine: Your posts on the topic are very giving on your knowledge of how it works."

"Lou: Nice marketing angle

Simone: Her friend passed away. Read the whole story sweetheart.

" Justin:  So put a gun in ur mouth. Please."

 "Tina: Sad maybe she should go to a children's cancer ward , and watch these children fight for every breath to try and stay ALIVE!! Then she may appreciate her health and life!!!!!" 



Luckily there were some people speaking up against this rude, offensive ignorant stuff.  
I usually don't respond to internet discussions, but couldn't help myself here as I was just stunned that so many people, often under their own facebook account, would feel free to write such things, telling her to kill herself, that she is an attention seeking whore, that she is a failure as there are people dying of cancer and so on. It hit home I guess but mostly, it made me think of the many reports of teenagers in the USA (yes this is all USA, and mostly Americans responding to this Rolling Stone feature) committing suicide over bullying. Everybody cries wolf then but here these same adults for the great majority write the most spiteful, offensive stuff on a public internet page, under their own identity and people seem totally used to this or ok with this? Anyway, within no time you end up in all sorts of petty discussions with people I found, and you see your own responses plastered all over the discussion. I guess you hope some people feel they maybe indeed said rude things and think twice, but in reality you just end up in a bully atmos and looking the crazy one yourself, hehe, which wasn't my aim obviously. I guess when you are subject to such language more often, it numbs you and makes it seem normal perhaps, when I read the responses another few times, also for this post, I surely wasn't as alarmed as I was while reading them the first time. There is just such a stigma on depression, wished people were less 'mean girls' and less offensive about other people's suffering, but that seems to just be the harsh times we live in, and most would probably not say the things they shout online to your face anyway (I hope at least). 



Here are some of the comments of people who also didn't agree with this shit:

"To wish someone's death...my god what kind of monster are you? But you know the sayin be afraid of what you wish for others because maybe that's will happen to you"
"I hope someone close to you gets to go through a deep depression and you help push them over the cliff."

"Tiffany: People are sick telling her to just kill herself. It's artists like her that give us these amazing and beautiful songs. It's sad that's she is or seems so sad, but it works in her music. I love her."

"cruel people who have never met her yet can hate on her harshly. wow just wow."

"I really hate seeing people's reactions to this. It's all oh then just kill yourself. Do you people have no decency? Jeez, people aren't depressed because they want to be. They are depressed because something that happens in their life's or something else makes them that way. It must be hard feeling that all you want to do is die, but jeez lay off even if she's a celebrity, she's not perfect. Nobody is and she doesn't deserve hurtful comments from assholes on this post. I hope Lana Del Rey can find help, and get better because she's really beautiful and she deserves the best from life, like everybody else."

"Some people are just constantly sad, usually there's no way to get rid of it. Lana is a good example, i think that art, as singing is good way to cope with it. She probably wishes she was dead for years already, it doesn't really mean anything, but it's a state of mind. I understand her pretty well ;)"

"Nothing like a good ol' Internet comment section to get the negativity flowing!"

"All of you negative commenters, you should be ashamed of yourselves. The singer is saying she wants to be dead and you are all calling her an attention seeker? You do not know Lana and you do NOT know that. She could be very serious, for all we know, and the last thing she needs is all this negativity. A lot of people like her and look up to her, plus she sings very well, so you can't call her talentless. You also shouldn't be saying that she doesn't have any reason to be depressed because she's rich - Yeah, maybe she is, but that doesn't exclude anyone from depression. Suicide and depression are not jokes - I don't care if you dislike her or think she's not talented and all that other trash, but you should not be taking this as a joke, not at all. We need to praying for her and hoping that she feels better soon because all humans are worth something - Even Lana. I hope you realize that suicide isn't an option, Lana and don't listen to the haters! I don't know every one of your songs, but I still like you and think that you are an amazing person worthy of having a good life! I'm praying for you! :)"

"Dion: This world is a heartless c*nt. I don't blame her, and I often feel the same way."

 "Amy: Some of these comments on here are outright pathetic and demeaning at best. Sad to see such cruel words on here. Incredible ignorance really. Educate yourselves people on mental illness. Stop passing judgment on a person you don't even know."

"Dianna: She is just being vocal and brutally honest about the way she feels. Its exhausting
to live each day as if its a bowl cherries. But to some people it isn't. When you suffer from severe depression nothing really makes you happy. Sometimes it can't be explained. Some of us can tough it out. And the there are some like Lana that its getting too rough to handle and the dark hole keeps getting deeper. I hope she gets help for whatever is ailing her physically and mentally."

"Penny: I have no idea who this woman is but what is up with all the ignorant and cruel comments? The internet has really made me realise how horrible people can be."

"Sonja: i had a friend many years ago, beautiful I was jealous of her! when I heard she wanted to commit suicide.. it pissed me off? I thought it was attention seeking.. a month later she committed suicide.... I couldn't believe it? she had everything.. money looks and her life looked like it was panned out? at the time I thought what a stupid cow? after her death :(( its haunted me 4 - 20 yrs wishing I loved her differently.."

"Tina: She's a fucking moron. I'm sure all of the people fighting for one more day would appreciate a perfectly healthy person taking life for granted. What an asshole.
 
Amelia: Depression is an illness as much as a broken leg. Ignorance towards mental illness just increases the stigma because idiots like you make comments about something you don't understand. I think you're the asshole here.

This great response also came in from Carrie"This quote is for all the ignorance toward mental illness that I am seeing in these comments. Depression is humiliating. It turns intelligent, kind people into zombies who can’t wash a dish or change their socks. It affects the ability to think clearly, to feel anything, to ascribe value to your children, your lifelong passions, your relative good fortune. It scoops out your normal healthy ability to cope with bad days and bad news, and replaces it with an unrecognizable sludge that finds no pleasure, no delight, no point in anything outside of bed. You alienate your friends because you can’t comport yourself socially, you risk your job because you can’t concentrate, you live in moderate squalor because you have no energy to stand up, let alone take out the garbage. You become pathetic and you know it. And you have no capacity to stop the downward plunge. You have no perspective, no emotional reserves, no faith that it will get better. So you feel guilty and ashamed of your inability to deal with life like a regular human, which exacerbates the depression and the isolation.
Depression is humiliating.
If you’ve never been depressed, thank your lucky stars and back off the folks who take a pill so they can make eye contact with the grocery store cashier. No one on earth would choose the nightmare of depression over an averagely turbulent normal life.
It’s not an incapacity to cope with day to day living in the modern world. It’s an incapacity to function. At all. If you and your loved ones have been spared, every blessing to you. If depression has taken root in you or your loved ones, every blessing to you, too.
Depression is humiliating.
No one chooses it. No one deserves it. It runs in families, it ruins families. You cannot imagine what it takes to feign normalcy, to show up to work, to make a dentist appointment, to pay bills, to walk your dog, to return library books on time, to keep enough toilet paper on hand, when you are exerting most of your capacity on trying not to kill yourself. Depression is real. Just because you’ve never had it doesn’t make it imaginary. Compassion is also real. And a depressed person may cling desperately to it until they are out of the woods and they may remember your compassion for the rest of their lives as a force greater than their depression. Have a heart. Judge not lest ye be judged."








In this Daily Mail article, a story is told about a woman with severe ongoing pain triggered by a stroke. She ended her life when all hope for the funding of a special operation was blocked. I guess that when people are submitted long enough to debilitating pain, this can make seemingly great lives seem unbearable for them at some point. I would always keep going personally, unless you can't take it anymore, but always keep in mind that if there is still outlook on improvement and even a short time of some enjoyment a day, life is worth hanging onto. But this article shows again the destructive powers of chronic pain on any individual. I saw a documentary about a Dutch woman who had developed very extreme ear ringing sounds. She heard screaming high pitched noises in her head and they grew worse and worse. She had severe head aches from them and couldn't tolerate the horrible sounds anymore at some point. When doctors couldn't help her anymore she ended her life. She was also a beautiful woman in her late 40's, with teenage children and in the docu she explained why she would end her life and the viewer heard the type of noise she heard all the time, and to be honest, I had to turn the sound of the television down, it was pretty awful.
I really hope that every rosacea patient reading this has other means at hand to control the burning pains and to keep going on and enjoying quality of life. 





If you're reading this, I must be dead'... tragic Dignitas suicide diary that shames the NHS: British woman took her own life after being denied a pioneering operation

 Erica Blaza, 51, took her own life in Switzerland last October. She suffered a stroke in October 2011 - and later developed agonising pains. Mrs Blaza begged Health Secretary Jeremy Hunt for a £45k brain procedure. But she received no reply and was told her condition was not 'exceptional. She tried every other option - then decided to take her own life

By Stephen Adams
Published: 22:28 GMT, 14 June 2014 | Updated: 22:34 GMT, 14 June 2014

A British woman took her own life at the ‘death clinic’ Dignitas after being denied a pioneering operation on the NHS. Despite not suffering from a terminal illness, Erica Blaza, 51, went to the Swiss clinic to die after suffering two years of ‘indescribable agony’ triggered by a stroke. Four months earlier Mrs Blaza had written to Health Secretary Jeremy Hunt pleading with him to fund a £45,000 brain operation. ‘I am losing the will to carry on, the pain is worse and my life is a  living hell spent in bed,’ she wrote. ‘I beg you to help me.’ But she received no reply, and was told by frustrated surgeons that her case was not considered ‘exceptional’ enough for NHS funding. Dozens of other British patients with the condition have been left suicidal since being turned down for the same surgery, and at least one other patient has killed herself. In a diary written before her death, Mrs Blaza reveals how she preferred to die at Dignitas than live on in agony for another few months while her operation was delayed. Having been turned down by the NHS, she was forced to pay to have the operation privately – only for the neurosurgeon who was due to perform the operation to break his wrist, delaying the operation. After trying every other possible medical treatment she told her husband Pete Finch: ‘I’ve had enough’ and travelled to Dignitas, where she took lethal drugs last October.
Assisting a suicide is illegal in Britain. But while in Switzerland the couple from Hoole, near Chester, were contacted by British police who astonishingly advised them to make a video of events. Mr Finch was questioned by police on his return to Britain, and no charges have so far been brought. The Crown Prosecution Service say his case is ‘under consideration’. Mrs Blaza did not blame NHS staff for her situation, but last night, her husband said: ‘If there had been NHS funding for that operation she may still be here today.’

Professor Tipu Aziz at Oxford’s John Radcliffe Hospital pioneered  a treatment which involves inserting electrodes into the brain. But just weeks before Mrs Blaza was due to be treated, NHS funding was abruptly cut. Every day Erica’s pain intensified. Mr Finch said: ‘Every waking moment was agony.’ Prof Aziz said he could only apply for funding for cases when the patient was in exceptional pain. ‘But how can you prove that a patient in pain is any more exceptional than another? It’s a nonsense,’ he said He has had to turn away ‘about 60’ UK patients since then, but continues to treat Irish patients, whose Government funds the procedures. He revealed another woman ‘effectively killed herself... When funding was turned down she turned up her opiates so much that when her gall bladder burst, she didn’t feel it and she died of septicaemia.’ Last night Alistair Thompson, of anti-euthanasia group Care Not Killing, said: ‘This is the first time I’ve heard of a police officer giving advice to make a video. It is very odd that they appear to be issuing advice on how to escape prosecution.’ But assisted suicide campaigner Dr Michael Irwin said: ‘I’m certain nobody has been charged for accompanying someone to Dignitas. There is a relaxed attitude from the police, as long as they are certain that it is an act of compassion.’ NHS England said: ‘Deep brain stimulation is a complicated treatment with potential serious risks and the NHS must only commission treatment where effectiveness is proven. This matter is currently being assessed by leading clinicians.’ A spokesman for the Health Secretary said: ‘Jeremy sends his sincerest condolences to the family in this tragic case.’

In her own searing words, Erica records her dying moments: 'I asked for the drugs that would end more like. "No more pain tonight, love," said Pete. "I love you," I said.' And then she drifted away
My name is Erica Blaza. In December 2011, on holiday  in Spain with my husband Pete, I had  a stroke. I was 49  and had never been seriously ill. After a week in hospital I came home to Chester,  only to have a second stroke.The effects were far more severe. I could not speak, write, dress myself or brush my hair. But I set about re-learning these things: the first word I said was ‘beer’, much to Pete’s amusement. I made slow, steady progress  but about a fortnight after returning home got very bad abdominal pain. Surgeons found  a strangulated hernia, and were able to ‘unpick’ my lower bowel. At the end of the operation my heart stopped and I had to be resuscitated. They discovered I had a rare heart problem called Long QT syndrome, which means it can stop at any time. I was fitted with an implantable cardiac defibrillator – an ICD or I Can’t Die, which restarts the heart. You might be thinking ‘My God, has this woman been unlucky?’
But this was just the start.
In February I returned home, deeply traumatized by it all. One night, after a dreadful panic attack, Pete and our friends took me to Chester hospital where  I was given a shot of the  anti-anxiety drug lorazepam. Thirty minutes later I was Erica again! The transformation was incredible. It was a turning point. With help from a fantastic NHS speech therapist, and from Pete, I started getting my life back. But in late March, out walking, the pain began. It started in the big toe, and by the next day it had spread to my whole right foot. We took it as a good thing, the ‘feeling coming back’. A week later the pain had spread to my entire leg. My excellent  GP diagnosed ‘central post-stroke pain’, or CPSP, and my stroke consultant confirmed it.  There was no cure, he said, but there were things I could try. It could level off or even disappear. It did not, and so began my fight with CPSP. Up to eight per cent of stroke sufferers get this, some mildly, but for some it’s debilitating. By June I was trying so much medication, some approved and some not, but the pain had spread to my entire right side and was much worse. I was referred to Liverpool’s Walton Centre and met specialists in two cutting-edge techniques: transcranial magnetic stimulation and TMS deep brain stimulation, DBS Both options required me to have my ICD removed, as they could make it malfunction. So in March 2013 I had it taken out – even though that meant I could die at any moment. I didn’t mind: the thought of sudden death had become rather appealing. The previous Christmas I’d told Pete I wanted to join Dignitas so  I could go there if nothing worked. Then I could at least end my life peacefully and be free from pain. You see, until this happened  I didn’t realise you can be in absolute agony and nobody can help you. But Pete begged me to try everything first and I agreed to wait until I had tried TMS. Unfortunately, the Walton Centre could not do TMS for me  at that time so I thought there was nothing else to try. The next day I began my application to join Dignitas, knowing their complicated approval process takes months. They want medical records, psychiatric assessments, the lot. You can’t just phone up and ask to top yourself next Tuesday. But then I was referred to Professor Tipu Aziz at the John Radcliffe Hospital in Oxford, who invented a new type of DBS, which has had positive results in 17 of 20 patients. We liked Prof Aziz straight away. He thought  I was a good candidate, telling me ‘I can help you’.
Of course there was a problem: the NHS had pretty much stopped funding it. But returning home Pete was elated: his enthusiasm was infectious and I felt more positive than I had for ages. The pain continued to worsen. By July I was on enough tablets  to put me in a drug-induced sleep for 20 hours a day. Life was intolerable. I was desperate for this to end. Whenever I woke up  I was gutted I was still alive. Then Prof Aziz emailed saying NHS funding had been denied. By this time, my Dignitas application had been accepted and I told Pete I wanted to make final arrangements. However, Prof Aziz agreed to do the treatment privately for £45,000. Breaking the news to me, like he’d won the lottery, Pete said: ‘It’s OK love, they are going to do it next month! We have to pay but so what?’ Mum insisted on paying half. Six weeks later I woke to hear Pete shouting ‘NO! NO! NO!’, tears streaming down his face. Prof Aziz had broken his hand and foot and would be off work for at least three months. You couldn’t make it up, I remember thinking, so that was it. I decided it was an omen and the operation would’ve gone badly anyway. There was no way I could carry on for another three months. It was time, I told Pete, to go to Dignitas. I simply couldn’t
endure this life of pain any longer. He didn’t want me to go and pleaded for help with anybody who’d listen. He’s tried so hard for me the past 20 months. I know he really loves me and I love him so very much. We have had almost 24 years together, but now I had to convince him to let me end my life. Then the Walton Centre unexpectedly approved my TMS treatment. Pete was delighted. I was not. I’d had enough. In September, still waiting for the machine, I awoke one night in terrible pain. I begged Pete to let me take an overdose and put a pillow over my face. We were both in tears but he just couldn’t do it. Prof Paul Eldridge at the Walton Centre offered both TMS and conventional DBS, with all the inherent risks. It wasn’t going to happen. It could go wrong, stopping me going to Dignitas, I argued. I was petrified of being stuck here, alive and in agony, for years. If assisted dying was allowed here I’d have tried everything, knowing that my suffering would end one way or the other. So Pete and I struck a deal: I’d try less risky TMS and that was it. If it failed he’d accompan me to Switzerland. After the first session I felt nothing, no pain relief. The next day’s session was the same. I only went to the third session – no effect – on condition I could call Dignitas. The clinic said I could come next week. I didn’t hesitate. Pete booked the flights and hotel and we both burst into tears. We flew to Switzerland. I was in utter agony but the fact the end of my pain was in sight lifted me. A doctor saw me twice in the days beforehand to ensure my intent and explain the procedure, both mandatory under Swiss law. It recognises people have the right to choose to end their lives suffering from an untreatable disease or pain. In the UK vets are allowed to put suffering animals to sleep. How precious have we become when we don’t give ourselves the same basic rights? Feeling guilty about wasting Prof Eldridge’s time, Pete emailed the Walton Centre to let them know we were here and thank them all. At 1am the phone rang. It was Cheshire Police. Walton’s lawyers had told them I had gone to Dignitas. We both spoke to them and they advised Pete that it might be a good idea to make a video. On Saturday they phoned again. I begged them to leave me alone, this was hard enough and the calls made me worried for Pete. On Sunday we reminisced and at night Pete said: ‘We’ve got to have a drink together love, one last time.’ Half a lager was enough. I woke twice that night in great pain. When Pete woke up in the morning there was nothing more to say and we gave each other a kiss. At 11am Pete wheeled me to Dignitas. I first took a stomach-settling drink. After the minimum half-hour wait I asked for the sodium pentobarbital barbiturate solution to end my life. I knocked it down like a shot of tequila and asked Pete to come and give me a cuddle. ‘No more pain tonight love,’ he said. ‘I love you,’ I said. ‘I love you even more’ he said. ‘No, really, I love you so much...’ [At this point Pete kissed Erica, and she died peacefully in his arms]
So if you’re reading this I must be dead.
This isn’t a rant, and I don’t blame anybody for what happened. Everybody helped me every step of the way. The NHS was fantastic, unbelievable. My GP, exceptional. Sometimes things can’t be fixed. You have to remember, as Pete does, that I am no longer in pain. Love, Erica xxx


To read Erica’s full diary, visit www.mailonline.co.uk/dignitasdiary
She writes for instance in this longer diary entry: "'I didn’t realise... you can be in absolute agony and sometimes there is nothing that can be done to help you'
Pictures by William Bouguereau








Mother-of-two jumped to her death from top of car park after suffering years of agonizing pain in her face caused by toothache 

 In this Daily Mail article is written: A mother-of-two killed herself by jumping from a multi-storey car park after suffering years of crippling pain in her face believed to have been caused by toothache.Janette Warburton, 58, was in agony and struggled to eat or sleep but her problem was never fully diagnosed, an inquest heard today. On March 29 this year she drove to Blackpool with her husband David to see a dentist because experts believed her pain was caused by a cracked filling.
She then told Mr Warburton she felt too unwell to attend the appointment so he went to the surgery to explain. But while he was away she threw herself from the fifth storey of the car park they were in. Parking warden Craig Walker told her inquest he saw the 58-year-old climbing a barrier and yelled 'come back' but she replied: 'I'm going' and jumped to her death. After her death, her sister Carol Clements, 61, found she had researched how to kill herself online. She said: 'The pain in her face first started around five years ago. She wasn't sure what it was but thought it was maybe because she'd had so many teeth removed'. Mrs Clements said in December last year the pain became unbearable. She said: 'Janette was in Tenerife and she bit down on something hard and it really set the pain off. 'This pain was worse than she'd ever felt before and she didn't sleep for weeks. 'She couldn't eat and she stopped going out because she couldn't cope with the pain.  
'Around that time, she started talking about suicide and we didn't know at the time but she'd been researching it on the internet. 'By the end, she was sleeping just an hour each night and she said she felt like her body was shutting down.  'Janette was loved by everyone and her two children were devoted to her.  'Her friends were just as upset as myself and my three children. There is a huge hole in my life'. Her husband believes his wife had not received the help she needed, and said her condition meant she should not have been discharged from Royal Preston Hospital ten days before her death. Psychiatrist Gillian Strachan said Mrs Warburton had received visits from the Lancashire Care Trust's crisis team, amid concerns about her mental health.
But she cancelled the visits following her discharge from hospital having resisted seeing a psychologist. Dr Strachan said that while Mrs Warburton had been depressed she had denied having any intention of suicide. But two notes written by Mrs Warburton were found at her home, including one talking about not wanting to live any more. Blackpool and Fylde coroner, Alan Wilson, accepted that Mrs Warburton had intended to take her own life and the post-mortem conclusion that she had died from multiple injuries following a fall. He said there was no evidence of any 'gross failing' in her care and that she had not met criteria to be sectioned. Her daughter Shelley Jacobs, who lives in Leicestershire and did not attend the hearing, said afterwards: 'Mum was vibrant, with a real sense of humour. She loved to travel and make cocktails. 'It's tragic that my seven-month old son Sawyer, her first grandchild, will not know his nana'. 








July 5th 2014
Touching, this girl made photo's of herself for 6,5 years while battling severe depression

Hollie's body was found just two days after she had sought medical help for her depression.



July 27th 2014
There is a song I heard a while ago. I think it reflects both in tune and lyrics the feelings many with a bad rosacea might have at times. I can float away on it. Thanks to my friend B. who also likes to listen and discuss music with me and we came to the conclusion that this song would be a pretty good fit for a piece of art we both love, the crows in the field by Van Gogh. The melody is haunting to us but beautiful at the same time, and we like the ongoing bass/guitar melody, like some funeral tune, in the background and it all floats like some horrible nightmare.  


Lyrics
Rows of houses, all bearing down on me
I can feel their blue hands touching me
All these things into position
All these things we'll one day swallow whole
And fade out again and fade out

This machine will, will not communicate
These thoughts and the strain I am under
Be a world child, form a circle
Before we all go under
And fade out again and fade out again

Cracked eggs, dead birds
Scream as they fight for life
I can feel death, can see its beady eyes
All these things into position
All these things we'll one day swallow whole
And fade out again and fade out again

Immerse your soul in love
IMMERSE YOUR SOUL IN LOVE








Hollie McEwen, 28, hanged herself just two days after she had sought medical help for her depression

August 24th 2014

A health visitor with a first class honours degree in nursing was found hanged after she became tormented by her severe skin condition.
Hollie McEwen, a dedicated professional, first suffered psoriasis as a 12-month-old but it eased with treatment.
However, it later reappeared due to stress and the 28-year-old became so depressed she took her own life at home.
Her father Andrew told an inquest: 'Her condition played a large part in what she decided to do.
'She was a beautiful, vibrant young woman who felt she couldn't deal with the condition. She felt this was the only way out.'
The Doncaster hearing was told she had suffered from bulimia as a teenager. Her family believed the eating disorder stemmed from her ongoing issues with her skin condition.
Her mother Wendy said: 'Her skin condition played a large part in her problems as a teenager and when older I feel this was at the root of all the problems.'

She had spent a long time writing several letters to loved ones which were found in a bin.
Her father, who saw her the evening before the tragedy said: 'She was a happy, young woman who enjoyed her work and social life but she kept everything very close to herself. We had a good laugh on that last night and there was no indication she was unhappy.'
Mrs McEwen said her daughter, who lived in Scawsby, Doncaster, had treatment for psoriasis over the last few years involving hospital stays and steroids after suffering anxiety attacks.
 Hollie had enjoyed a family holiday in Turkey but was 'down' after being given an anti-depression drug by her GP which failed to lighten her mood.
'She was an intelligent, determined and organised young woman,' she said. 'I told her to keep going with the tablets and give it time.'
When told about her daughter's death she said: 'I was in absolute shock. Her death has left a large hole in our family. I still can't understand why this has happened.'
Hollie's brother Andrew told the inquest: 'She was a happy young woman who enjoyed her work and social life. She kept everything very close to herself.'

He said there was no indication that she was unhappy the evening before she died. He added: 'As a teenager she was always conscious of her skin condition and it worried her greatly.'
Hollie's neighbour Elaine Lunn found a note from her on the morning of Friday, May 23 asking her to call the emergency services so Hollie's family would not find her body.
She said: 'I believe she had planned it. There was nothing to suggest prior that she was going to do anything like this. I feel totally distraught.'
She added: 'She was a very attractive young woman. She was energetic, thoughtful and caring and studied to further her career. She was very bright and intelligent.'
Nurse and friend Angelina Deighton, who trained with Hollie at Sheffield Hallam University, said she knew her psoriasis had worried Hollie and she said she was having treatment and counselling.
'She was always the life and soul of our friendship group,' she said. 'She was always bubbly. She had a boyfriend for a few months in 2013 but it fizzled out and she wasn't concerned about it.
'Lately she described being tired, down and just not coping. She had been to her GP for anti-depressants but she didn't think counselling would help her and she tried to help herself.
'I tried time and time again to get her to seek help. She had many friends who thought she would never do anything like this.'
Behavioural psychotherapist Jessica Dunn, who had a session with Hollie just two days before she died, said Hollie had started to feel anxious and overwhelmed at having to plan a friend's hen party.

'She was well presented with immaculate hair and make-up,' said Miss Dunn. She had 'dark thoughts' but had no intention of carrying them out. 'She told me "I wouldn't put my family through that".'
Hollie had been avoiding her friends and not socialising because her mood was so low. After breaking down in tears in the witness stand Miss Dunn said: 'I had no concern for her safety.'
Dr Elena Pamphilon, Hollie's GP for ten years, said she had come in for repeat prescriptions for medication to treat her psoriasis which she managed herself.
She attended with depression and anxiety towards the end of 2013 and again this year. 'In May she said she was finding things overwhelming but did not mention any particular trigger.'

The doctor gave her sertraline, an anti-depressant drug, but a fortnight later Hollie's mood had worsened and she went back.
'She may have had to wait longer to see the benefits of the drug,' said Dr Pamphilon. 'There isn't a drug to give more immediate relief.'
Assistant Doncaster coroner Fred Curtis said: 'She was a young lady who has achieved well in just about everything she has done.'
Although suffering from psoriasis and bouts of anxiety and depression she was 'happy and active' until her mood began to change towards the end of 2013.
'She had the most loving of families - a family that really cared for her,' said the coroner. 'They were aware of some of the problems but never the full extent thereafter not because of any fault on their part because Hollie did not reveal the full extent of the depression she suffered at times.'
She never told her family, doctors or friends about her suicide plans. 'During the spring of 2014 her mood was at all times lower than that recognised by anyone,' said the coroner.
'That's not to criticise her family or health services. It may be down in part to the fact that she cared for so many people she didn't want them to believe she had a very low mood and didn't want to distress them.'
He said her death involved planning 'which she kept from everyone.'
Recording a suicide verdict he extended his sympathies to the family and said: 'She had been successful and had a good future ahead of her.'

Ms McEwen, pictured, was the 'life and soul' of her group, her friends saidMs McEwen, pictured, had been prescribed drugs to help combat her depression











November 24th 2014

I read some articles on chronic pain, illness and depression and suicide, as I'm not doing great at the moment rosacea wise. This blog post has good things to say, the intro was very recognizable for me:
"Everyone who lives with a long-term illness thinks about suicide at some time during that illness. My hunch is that these emotions usually come early in the disease, during the first struggles with the reality of chronic illness. The second most common occurrence of those sentiments comes, I think, at times of crisis in the disease, at times of reversals."







 This blog post from a blogger with chronic nerve pain really touched me and I recognized things in it. Her whole blog is amazing.

Suicide is Not About You
Posted on January 13, 2014 by leitis23

Warning: This is a candid piece about a difficult subject.  Please understand I am not advocating suicide nor is this a cry for help.  I’m encouraging understanding and compassion.

The chronically ill suffer from severe depression, grief, loss, and a high suicide rate, but these symptoms are rarely openly discussed.  Today, however, I will brave speaking candidly about the topic that is so much easier to ignore.  We all know it is there, but neither the chronically ill, nor the healthy want to acknowledge the elephant in the room hogging the sofa and the remote.  Why?  Simple, the hard truths everyone would have to acknowledge are more terrifying than an IRS audit on infinite loop.  Even at this moment many would rather suffer through its poor taste in TV shows than read on and acknowledge this particular elephant.


Elephant-in-the-room


Well, I’ve never really been one to go with the flow.  We need to drag the subject out into the sun, take a good hard look and have an honest discussion.   The hiding and dodging may be more comfortable for some, but it is doing damage of its own.  By ignoring it you not only make it  bigger and scarier, but it also makes the one suffering feel even more isolated.  It is better to be direct and honest.  It is a brave soul that opens a door to a very private part of life and lets other people in.  So, take a good deep breath, steady your heart and quiet your mind.  I am not only going to venture into this taboo subject, I am going to share my personal experience.

I sympathize completely.

The mental deterioration due to my illness is a part of me, my experience, and thought process that I rarely speak of because it makes the people around me terribly uncomfortable.  Right there, my usual silence is a demonstration of how society makes surviving this side of chronic illness one of the hardest obstacles to overcome.  In the medical community it is so well known that chronic pain and illness have such a high rate of depression and suicide that many doctors will make sure their patients have a counselor and was on antidepressants.  Doctors are well aware, but society doesn’t fully realize the impact chronic pain and illness has on the mental state of the sufferer.
Today the two paths become one.

When my body first began its rapid slide to the current disaster I approached it like everyone else; go to the doctor, find the problem, and fix it.  Obviously, right?  Well, as the months started to turn into years and the pain and misery weren’t abating, in fact, they were increasing, my thought process began to diverge from those who surrounded me.  I did go to the doctor, many doctors actually, many times, but that is where my original plan failed.  The pain was from nerve damage, but that was where the understanding of my situation stopped.  My body kept adding more and more disparate symptoms and the doctors seemed to get less and less understanding of my situation.  As the confusion regarding my illness increased so did my pain and with each failed attempt at managing the pain or finding a diagnosis, my hopelessness soared.
pain - real pain scale

At first I felt adrift, disconnected from everyone and everything.  The days blurred and what was once important no longer seemed real.  I knew I was a part of the world, but it felt more like I was watching it from afar.  The life I had seemed so long ago and so far away.  I would never live that life of adventure and accomplishment again and I grieved that loss terribly every second of every day. My days now consisted of lying in bed using ice, heat, medication, stretches, the fetal position, anything and everything I could think of to lessen the pain.  I would have turned cartwheels in a clown suit if I thought it would help.  Being pain free was unimaginable in my current state, I just wanted it to decrease enough so I could take a breath.  All I wanted was a little relief, just a tiny bit, just an hour, or even a minute, whatever life could find it in its heart to grant me.  The only real relief I knew was sleep and the first thing that goes with chronic pain is (drum roll) sleep.  Even when I was granted short stints of sweet sleep I was told by others that I moaned and even cried in my sleep.  My conscious mind got some relief, but my body’s pain continued.

There was no escaping the pain.

After months of this, day in and day out with no possibilities of relief my heart and mind came together on one thing: what I was not living, I was just surviving.  If I was staring down day after day, year after year of so much agonizing pain that I had no room for any quality of life I knew that this fight was a losing one and there was another option.

Suicide is usually associated with anger.  Most of the time someone reaches a very dark place in their lives and kills themselves with some variation on the thought of, “they’ll be sorry,” or “I’ll show them.”  It is often a permanent solution to a temporary problem.  However, in some cases, there is no anger involved.  I believed that my situation was permanent and realistically there wasn’t any reason to believe otherwise.  I was in so much pain physically and mentally that I couldn’t survive a life time of this level of suffering.  As far as I was concerned death would be a relief, it would be an end to this awful pain.    I was only in my twenties and my body had forced me to face my own mortality, and you know what?  I was okay with it.  I was ready to go.  I wasn’t angry.  I wasn’t kicking and screaming and gnashing my teeth.  As far as I was concerned it was my path to peace.  The only problem was my loved ones.

holding on is harder

I spent several months having subtle and not so subtle conversations with those I loved. I was trying to help them realize what a kindness it would be to let me go.  That if they could find it in their hearts to understand the agony I suffered by living then they would want me to find relief.  By the time I reached this point the only reason I was still alive was for the people I loved.  I needed to know that they would be alright without me.  At the same time I resented them for forcing me to continue to suffer.  Some people understood and told me as much, to this day I am grateful for their selflessness.  I know what that cost them to say and what they were prepared to endure for me.  The people who refused to release me, on some level, though I understand their point, I resented it. They really had no clue how much pain I was suffering and in turn what they were asking of me.  In this instance, to me, encouraging me to live felt like cruel and unusual punishment. Being alive and living are two different things.

Physical pain is lonely, the depression was excruciating.
Physical pain is lonely, the depression was excruciating. 
Chronic physical pain is lonely and painful in more ways than one.

Some states allow euthanasia for those with terminal illness.  I have seen pictures and read stories of people attending their own wakes and the next day dying peacefully and comfortably in a bed surrounded by loved ones.  I believe people should have the right to choose whether they live or die.  Even before my body turned on me I believed that people with terminal illnesses should have a choice.  Suicide for people like that is not anger; it is because their suffering is too great.  Regardless of how the pain presents, you just don’t know what someone else is experiencing.  What everyone needs is an honest discussion based in understanding and compassion.

There are worse things than death.
There are worse things than death.

Still from personal experience of grief I knew it was those left behind that really carried the burden.  No matter how I suffered I knew if I died there were some people I would take with me.  So I lived on in anger and resentment. That is, when I wasn’t too busy trying not to scream from the pain.  My mental state just continued to deteriorate, many of my relationships suffered, and still I kept on keeping on.  Living for others is no life at all.  I have never been so angry in my life.  Which didn’t help the situation at all. If you look at it honestly we were all being selfish.  I wanted my pain to end and they didn’t want theirs to begin.  I get it, I do, but I don’t think that understanding goes both ways.  I doubt many people understood my side. Many felt they knew what was best for me and living was it regardless of what that life looked like.  I, on the other hand, had a drastically different opinion on the matter.  I believed and still do, that it is not the quantity of life that matters, it’s the quality.

That experience will forever make me mindful of what I ask of others.  It has allowed me a lot kindness when it comes to understanding other people’s choices.  It gave me a depth and breadth of understanding and compassion for which I am grateful, but I still think the price of admission was too high.

Unintended consequences still have a cost.
Unintended consequences still have a cost.

I was lucky, not too many months later I found a new doctor that offered me the peripherally implanted spinal stimulator, a treatment that I have no doubt saved my life.  Even for those I loved I could not have survived long in that much pain.  While the stimulator didn’t take away all my pain it was that modicum of relief that I needed to begin to function again.  I am nowhere near my old life, but I have found small ways to pull enough pieces together so I can feel human again.  It isn’t perfect, far from it, but I’m still finding new ways each day that make it worthwhile to wake up the next.  That doesn’t mean I don’t still have bad days, or I don’t still struggle, I do, but right now I know how to hang on and find the next good thing that makes life worth living.

Hanging on, even if it's by a thread, still keeps you in the game.
Hanging on, even if it’s by a thread, still keeps you in the game.


Depression and suicide are as much a part of chronic illness as all the other symptoms.  The problem is that as a society we ignore and avoid it.  Unfortunately this leaves the chronically ill alone to cope with some pretty strong demons.  I believe if someone had sat me down for a non-judgmental discussion it would have lightened that load.  This may seem like a terrifying discussion, but talking about it doesn’t give them any ideas.  These thoughts have been bouncing around in their brains relentlessly for ages.  Instead you now have the opportunity to offer some different perspectives or get them help if they don’t already have it.  Just remember to lead with compassion and understanding; these thoughts aren’t because of you.  Chances are, like me, they are holding on for you and offering your ear and shoulder will have profound meaning to them.


family







I've been reading a book about a Dutch actor, a gorgeous man named Antonie Kamerling, he committed suicide a few years ago and his wife, an actress, wrote a book about it. My mum bought it, then passed it on to my sister who then passed it on to me. Not a great book of fiction or anything, but gripping and insightful nevertheless because of its topic. She did not understand much from his depressions and it shows even now, years later, in this book and how she wrote it. 
What she did was basically not understand. He was highly educated, very emotional and smart guy and one of the very few good actors Holland had. She never really studied or was good at school and was more into intuition stuff and just a happy go lucky type of person. Optimistic and sweet she seemed. But while reading that book it seemed clear that she let him overrule him intellectually all the time. He had  highs and lows, was manic depressive they found out right at the end. But she would nag him when we was in bed all day, and then criticize him when he was hyper and out rushing around all day. Constantly the same discussions, her asking what is wrong with you? Why are you so down? Why not this or that. And after a while he just shut her out. She had no clue. So he would spend all days in bed, only coming out to do the bare minimum for their children, or they would be on holiday and he would want to drop her off at night at the hotel and go out alone, stroll the place and she would cry and start a huge fight. 

Truth is I thought all along reading that book that I would have probably understood those dark waves he had better and not pester him about wanting to go out at night. Or spending whole nights up behind the computer, he did that at some point and she was upset about that as well then. Just; she wanted normality, but because they were both celebrities here they didn't want to show the outside world any of that. So they pretended nice weather all the time in public. He would throw massive rows and at some point was allergic to everything she said and did. Then he would be in bed again for long times and she did everything in the house and with the kids. All the way at the end, when he had tried to walk in the sea to drown and then stood near a train track and was too afraid to jump, and he told her, then she finally took him to a shrink. He got pills, he tried some very mild antidepressants before but they made him hyper. Now he got serious pills but, they would take 6 weeks to start working. In the mean time they were sent home. So what did she do? He had tried to end his life 2 weeks ago, and she just goes to work. Leaving him alone. Then he did kill himself at home.

This might sound crass and I understand that it is him in the end who is responsible for his actions, but how much control can you credit someone with a serious mental illness with in such a stage? So she comes across as the poor victim by this point in the book, having put up with such awful behavior from him, she is sucked empty, she could have done nothing more for him yadayada. My sister was full on her side and said she wouldn't have done it any better, probably a lot worse and that such people like him just suck you dry. I looked at it from an entirely different perspective, more form his side, mainly because I know depression I guess. She just didn't get it, period. Maybe she should have cancelled all work for 2 months and made sure she was with him all the time, I thought at the end of the book. Go lay next to him in bed and watch movies for 6 weeks, make sure he gets his drugs, if needed administer them yourself, but make sure he gets through those 6 weeks unharmed and see what the meds will do. I feel for him, it might have turned out differently in a different situation perhaps, although we always tend to think that, not always realistically. And although it is very heavy to live with a depressed partner, but I think all you need to do is be there for the other. Not push them constantly, just give them space to deal with things but be understanding and not judgmental and give them lots of hugs and physical contact and do the things with them which make them calm and content when they have a bad spell. But also be on the lookout for when things threaten to go really wrong, and make sure that person gets help, and can't harm himself in the meantime. 
I'm just like that during very bad health spells, I'm awful to be with then, I think. Just so restless and grumpy but the partners who made life much worse for me personally in the past, were the ones who had little understanding and who kept asking me what is wrong and why I am not more positive, and why I don't go do yoga or golf and all those empty stupid suggestions which all imply; get over yourself now already, ok? Giving you the feeling it is all a matter of laziness versus willpower. Driving you even further into the depression. 


I think when you have someone who understands you and knows what you are going through, that is already a huge comfort. Not feeling the need to pretend and be better than you really feel. I'm not sure how it goes for others but for me these periods come in waves and I also have good periods where I feel relatively happy and energetic and just am a lot nicer to be with. I guess with people like me, us rosaceans who suffer and can't push the darkness away all the time perhaps, you need to seize the day and just make the most of the good spells and get through the bad ones as best as possible. I felt with these people in the book that if he was too chirpy she was worried because he was unnaturally hyper, and when he was in the dump it was obviously a huge problem too. Constant criticism in other words, no matter how well meant, I think it was a lot of naivety from her part and she was more insecure personality wise than him, Maybe she let him talk his way out of it all and made her belief what he wanted her to belief. You need to be a strong headed person to deal with depression because you will not have the same person in front of you from day to day. I got that criticism often actually; that things can change from one day to the next. Not just my moods and outlook but also what I can and can't eat rosacea wise, or even opinions. That is hard to deal with as a partner unless you know where it stems from and how it works and that it is not something to become insecure about yourself. But to read it in the context of the moods the other person is in. 

My rosacea friend replied to this that he absolutely agreed (this convo was actually taking place in real life exchange and then I thought, it might be something for the blog..). He started an antidepressants and felt like hell the first 3 weeks at least he said. Absolutely horrible and they do say often that the first weeks of antidepressant use put patients at the highest risk window frame of suicide. Your body needs to adjust to all these new chemicals which are primarily attacking the brain structures and neurons and electrons, so you get a host of side effects once your body adjusts to them, but NO ANTIDEPRESSANT ACTIONS yet. Because they only start to manifest themselves once the medication has reached sufficient plasma levels, which can take those infamous 6 weeks. It's a risky thing to go through for a seriously depressed person. You need constant support, I remember taking remeron for the first time and I was at my wits end by then from a horrendous merciless year of 24/7 burning and flushing and sleeplessness and hopelessness and luckily for me remeron is the exception to the rule and starts working within 3 weeks typically, but there were side effects and a lot of doubts about whether or not to continue. The answer should always be yes I think, as long as the side effects are not dangerous, because most side effects will wear off!! Once your body is adjusted to the medication. And then, he relief, more calm, less anxiety, less flushing mostly in my case. It might take trial and error between different antidepressants though to find the right one. Tricky time again. But worth it I think before people really contemplate ending their lives.They need constant reassurance that there is basically nothing to lose and that they need to give the medication a fair time to start doing their work. 

The friend got that support thank god and was reassured and comforted in the adjustment time.









  • Julia Kelly suffered from chronic pain after two car accidents 
  • 39-year-old was forced to move house and give up her job 
  • Charity worker committed suicide on November 2 last year
  • Her father David is continuing her charity, A Way With Pain 

Julia Kelly spent most of her short life racked by pain.
Plagued by excruciating gynaecological complaints from the age of 11, she went on to suffer daily agony from two car accidents - neither of which were her fault.
After the first, 10 years ago, she battled to retain a sense of normality.
But over time, with her body giving up, she struggled to come to terms with how the pain so drastically altered the course of her life.

Julia Kelly (centre) faced an ongoing battle with chronic pain after two car accidents. She is pictured with her parents David (left) and Valerie (right)
Julia Kelly (centre) faced an ongoing battle with chronic pain after two car accidents. She is pictured with her parents David (left) and Valerie (right)

I AM CHRONIC PAIN 

Before her death, Julia helped produce a short, but poignant film to help educate others about the real effect of living with chronic pain. Her father David believes the words are a stark reminder of how the condition affects sufferers.
You can’t see me,
You probably do not even know I exist,
I am chronic pain,
I wreck lives,
I destroy happiness,
I tear relationships apart, shatter dreams,
I stop careers in their tracks,
I may even take your home and empty your bank account,
And let’s not forget to mention the daily, physical pain I will cause you,
I can appear at any time,
And I do not discriminate,
Beware - one day I may even take your life away.
At 37, when most women dream of having a family, Julia was so immobile she couldn't tie her own shoelaces.
Forced to move home to her parents and quit her beloved job, the lack of a 'proper life' and independence became unbearable for the sociable and extremely intelligent charity worker.
But it was the second car accident two years ago, which left her fearing incontinence, that was the final straw.
Three months ago, on November 2, Julia ended her life aged just 39, no longer able to bear her constant suffering.
She left no note, but her family are in no doubt the agony she endured for several years - and the loneliness and despair it brought - are to blame.
Her father David, 72, is now running the pain charity she founded to help others battling the condition to realise they are not alone.
He hopes that by doing so, others may be spared the tragedy and heartache his family has endured.
More than 1.5 billion people worldwide - or around one in seven of us - suffer from chronic pain, according to the American Academy of Pain Medication.
David, 72, has spoken about how the loneliness and despair of chronic pain led to Julia, pictured at the family home before the accident, committing suicide last year
Julia enjoys the snow at a nearby park with her father after the accidents
David, 72, has spoken about how the loneliness and despair of chronic pain led to Julia, pictured left at the family home before her two accidents, committing suicide last year
Looking back, it's so stupidly, blatantly obvious that she was depressed. It didn't cross our minds – and she kept it from us. 
The condition is defined as pain that lasts as three or more months.
Despite these overwhelming statistics, chronic pain remains one of the most poorly understood and underfunded services in global healthcare.
As a result, trying to get effective treatment can be lengthy and frustrating, leaving those affected feeling helpless and in some cases, suicidal.
But now, thanks to a new Hollywood film starring Jennifer Aniston, it has been thrust into the limelight - to the relief of families such as the Kellys, who hope it will raise awareness of the brutal reality of living and caring for someone - with the condition.
In the film, Aniston plays Claire Bennett, who suffers horrific chronic pain following a car accident.
Her physical pain is evident in the scars that line her body and the way she carries herself, wincing with each tentative step.
She has driven away her husband and her friends – and even her chronic-pain support group has kicked her out.
It is only the suicide of Nina, one of her fellow chronic-pain group members, that triggers her to confront her life with pain – and how to deal with it head on.
The film spares none of the misery that sufferers deal with on a daily basis: the agony of taking just a few steps, the torture of sitting in a car as it goes over a speed bump, the relentless insomnia – and the in some cases, the anger towards the person or situation that caused the pain.
Tragically for Julia, pain won - but her family are determined to help others suffering with chronic pain avoid the same fate.
As a young child Julia enjoyed playing with her brother Brett. They are pictured together enjoying an Easter egg hunt in the spring sun 
As a young child Julia enjoyed playing with her brother Brett. They are pictured together enjoying an Easter egg hunt in the spring sun 
Julia and Brett, pictured in the snow outside the family home, made the most of their time together as children and her father David is heartbroken that she was never able to have children herself
Julia and Brett, pictured in the snow outside the family home, made the most of their time together as children and her father David is heartbroken that she was never able to have children herself
As a young girl Julia had no idea what was going to happen to her and enjoyed playing in the garden and dressing up in beautiful clothes
As a young girl Julia had no idea what was going to happen to her and enjoyed playing in the garden and dressing up in beautiful clothes
For David and his wife Valerie, 74, the film was particularly poignant and raw as they attended a screening just three months to the day that Julia had taken her own life.
'Ironically, our train trip from Northamptonshire to London was held up for 30 minutes due to someone jumping off a bridge onto the railway line,' David told MailOnline.
'With chronic pain - or a mental health issue – it's so important to realise you are not alone.
'There are people who have trodden this path before and can help you. And I realise now that unless you have been through it, you will never understand it.
'The cruel fact is that this condition affects one in seven people and has a massive impact on social structure, working environment, education and employment.
'Teachers and employers, for example, are often not aware of chronic pain and think sufferers are perhaps lazy, when actually the person is suffering very debilitating pain that no one can see.
'Whereas you can see a broken arm or a wheelchair, you can't see chronic pain.' 
Julia is pictured celebrating her 21st birthday with Brett. She suffered from severe endometriosis from the age of 16
Julia is pictured celebrating her 21st birthday with Brett. She suffered from severe endometriosis from the age of 16
David and Valerie feel that in Claire, Jennifer Aniston played a powerfully moving character.
'We saw a very close resemblance to Julia so often,' he said. 'The way her body moved, the way she walked - every movement was so evidently painful.
'Travelling in a vehicle was also such agony, her facial expressions showed the pain all so often.'
A few times, she said she wished she had never been born, that she'd never had a good life because of the pain 
And as also becomes apparent in the film, life with chronic pain can be incredibly lonely.
'The life you had - work, going out with friends - has gone,' said David, a retired commercial manager.
'But everyone else continues with their life. They work all week, see their partners on the weekend.
'Julia didn't have that – and unless you go through that bereavement process properly for the life you once had – and come to terms with the fact it's gone – it will slowly eat away at you until you crack.
'Whenever I see a young girl, probably married, pushing a pushchair down the street, I feel sad that Julia never had that.
'A few times, she said she wished she had never been born, that she'd never had a good life because of the pain.
Julia and her mother Valerie enjoy a drink together. David said: 'While I find I can lose myself in the charity work, which helps with the grief, my poor wife is not so fortunate'
Julia and her mother Valerie enjoy a drink together. David said: 'While I find I can lose myself in the charity work, which helps with the grief, my poor wife is not so fortunate'
David said: 'Looking back, it's so stupidly, blatantly obvious that she was depressed. It didn't cross our minds – and she kept it from us'
David said: 'Looking back, it's so stupidly, blatantly obvious that she was depressed. It didn't cross our minds – and she kept it from us'
Diagnosed with severe endometriosis at 16 after suffering crippling period pains, Julia was given hormonal medication so powerful it induced a 'mock menopause'.
David said: 'Because of her terrible endometriosis when she was a teenager, she often missed out on fun nights out with her friends, relationships were impossible and the pain impacted hugely upon her education.'
Despite missing huge chunks of her education because of it, she was overjoyed to secure a job with a local charity at the age of 28.
Writing on the charity's website before her death, Julia said: 'I was so proud to finally be working full time and enjoying life, my symptoms became manageable and I returned to work and got my very own first home.' 
But in July 2005 she was involved in a car accident – and, unbeknown to her at this point, she would be in pain every day for the rest of her life.
While for the first few years, the pain was manageable, by May 2010, Julia was in agony.
'She said the pain was like red hot pokers in her leg,' said David. 'It hurt to stand, it hurt to sit – she needed cushions for everything.'
Unable to stand, she could only crawl around her flat on her hands and knees.
By the July, the pain forced Julia to abandon life as she knew it. 
'She had to move home – and I don't think she ever came to terms with it – it was like a bereavement,' said David.

MY LIFE FELT AS THOUGH IT WAS SPIRALLING OUT OF CONTROL 

By May 2010, five years after her first car accident, Julia’s pain was so bad she was unable to stand – and she could only move around her flat by crawling on her hands and knees.
By the July, it forced her to abandon life as she knew it.
Writing for her charity website in 2012, she said: 'Life became a blur of hospital appointments and I was put on heavy medication to help with the pain, including tramadol, cocodamol, ibuprofen, diazepam, amitriptyline and gabapentin.
'My life felt as though it was spiralling completely out of control, the sheer pain and meds meant I could no longer drive, so I became totally reliant upon my recently retired parents to ferry me to my never ending stream of medical appointments.
'I could no longer manage living on my own so once more, my loving parents came to the rescue, took me in and became my carers.
'Not being able to work meant having to give up the home I’d worked so hard for, and my much loved and taken for granted independence evaporated right there and then. I felt like I was losing my identity.
'I felt totally useless, a complete burden on everyone.
'Feelings of hopelessness, loneliness and despair prevailed.
'Despite a loving family, great friends and my faithful cat Milly, I felt totally useless, a complete burden on everyone and, quite frankly, an emotional basket case.
'Night times were the worst - they seemed so long and I couldn’t sleep for the pain.
'I was lucky if I got a couple of hours sleep so it wasn’t long before the effects of sleep deprivation kicked in, and I found myself turning into a person I hardly recognised anymore, so irritable and angry.'
After a wealth of tests, which revealed toxic liquid had been passing from one of the discs in her spine onto the nerve roots causing pain, she underwent surgery to remove two discs.
Along the way, she found several coping strategies including psychology sessions, hypnotherapy, yoga, meditation and osteopathy.
Despite the pain Julia retained a glimmer of hope that one day, her life might be able to return to some kind of normality.
But in a cruel twist of fate, lightening did strike twice.
In March 2013, Julia was involved in a second car accident when, once again, someone drove into her car.
Her injuries meant she needed major surgery to re-fuse her lower spine.
'After this accident, she was in absolute pain all of the time,' said David.
'From then, up to her death in November 2014, Julia had 72 appointments with a mixture of consultants, doctors, physiotherapists and pain clinics.
'In terms of her quality of life, she was existing, not living.
'She couldn't even lace her shoes up or get dressed without help and some of the strong pain medication made her incoherent.
'There were no holidays. Her days consisted of being showered by lunchtime, a bit of charity work and then us taking her to the shops before making her dinner.'
Julia was also left with problems with her bowel and feared she may become reliant on a colostomy bag.
After the two car accidents Julia attended 72 different appointments with a mixture of consultants, doctors and physiotherapists. Despite this she still suffered from a low quality of life and found it painful to move
After the two car accidents Julia attended 72 different appointments with a mixture of consultants, doctors and physiotherapists. Despite this she still suffered from a low quality of life and found it painful to move
'It was the bowel problems that were the last straw,' said David. 'She felt if she lost her dignity, she would have lost everything. The carpet was pulled from under her.
'Until the second accident, she felt she could just about keep up with life, perhaps get a part-time job, but these dreams were then destroyed.'
On top of this, there was the stress of claiming benefits and work tribunals.
Despite overwhelming medical evidence to support her claim, Julia was forced to endure three tribunals - ordeals which only hampered her recovery, her family believes.
The cruel irony was that while Julia was in fact desperate to work, she was made to feel she was exaggerating the pain she was in.
'People just don't understand how crippling it can be,' said David.
Now, three months after Julia's death and with her inquest next month, he believes he missed signs that his daughter was severely depressed.
'When you have the benefit of hindsight, it is so easy,' he said.
'We always supported Julia, cared for her and helped her financially. But she was very good at hiding things from us.
'We could see she was in pain, she couldn't sleep and how each step was excruciatingly painful for her, but we did not understand the mental anguish she was going through.
'Looking back, it's so stupidly, blatantly obvious that she was depressed. It didn't cross our minds – and she kept it from us.
'We later found out she'd told a friend it would destroy us if we knew. We are getting on a bit and I fear Julia felt – wrongly - she would become a burden to us.'
Despite missing huge chunks of her education because of the pain, Julia was overjoyed to get a job with a local charity at the age of 28. She is pictured with her father after securing some funding
Despite missing huge chunks of her education because of the pain, Julia was overjoyed to get a job with a local charity at the age of 28. She is pictured with her father after securing some funding
Writing on the charity's website before her death, Julia said: 'I was so proud to finally be working full time and enjoying life, my symptoms became manageable and I returned to work and got my very own first home'
Writing on the charity's website before her death, Julia said: 'I was so proud to finally be working full time and enjoying life, my symptoms became manageable and I returned to work and got my very own first home'
Just a month before her death, he and Julia went away together for a few days.
'I felt she was trying to build up the courage to tell me something, but she just couldn't get the words out,' said David.
'The next month, she had gone.'
Does he wish he had done more?
'Looking back, you can beat yourself up – my wife and I always wonder if we could have done more,' he said.
'But in real terms, we couldn't take the pain away and we couldn't stop it getting any worse. We couldn't help the loneliness.'
However he believes Julia's decision to end her life was 'totally on the spur of the moment'.
'On the Tuesday before she died, Valerie had dinner with her and she seemed fine,' said David.
'But she had been hounded by the Department for Work and Pensions over some payments she owed and I suppose, with the pain, her patience finally exploded.'
In the horrific  three months after Julia's death David has focused his energy on building up the charity she founded, A Way With Pain
In the horrific three months after Julia's death David has focused his energy on building up the charity she founded, A Way With Pain
The family first became aware something was wrong when Julia failed to arrive for Sunday dinner.
'She'd been back at her own flat that we'd kept paying for so she had somewhere to go for space,' explained David. 'Although most of the time she lived with us, as she was so immobile.'
At 6.30pm, two hours after Julia was due to arrive back, both David and his son Brett, 42, sent her a text.
When they received no reply, a call to a friend of Julia's who lived nearby revealed her car was there and the lights in the flat were on.
Feeling uneasy, David and Brett drove the 20 minutes to Julia's flat.
'We went around the back of the house and through the blind we could see her lying on the settee, not moving,' David said. 
'Brett could see what had happened. We called the police.'
In the horrific three months since that day, David has focused his energy on building up the charity Julia founded, A Way With Pain.
Jennifer Aniston (pictured) is starring in Cake - a new Hollywood film about chronic pain 
Jennifer Aniston (pictured) is starring in Cake - a new Hollywood film about chronic pain 
David and Valerie feel that Jennifer Aniston (pictured left) plays a powerfully moving character in the new film. 'We saw a very close resemblance to Julia so often in the film,' they said
David and Valerie feel that Jennifer Aniston (pictured left) plays a powerfully moving character in the new film. 'We saw a very close resemblance to Julia so often in the film,' they said
'In 2012, she came to me saying she wanted to do something proactive, explaining there really wasn't anything out there to help people like her,' he said.
'The charity was started to create awareness of chronic pain and support those affected – and I became involved to support her.
'Now I'm keeping going as a legacy to Julia.
'And while I find I can lose myself in the charity work, which helps with the grief, my poor wife is not so fortunate.'
Going forward, the family hopes the website will bring solace to others living with – or caring for someone with - chronic pain.
'It's a place where people can visit, find comfort and share their experiences on the forum, if they so wish,' said David.
'Hopefully it can eliminate some of the fear, frustration, loneliness and isolation that can be felt when living and dealing with chronic pain on a daily basis.'
Cake is in cinemas nationwide now
For confidential support, contact the Samaritans on 08457 909090 (the helpline is open 24 hours a day, 365 days a year) or visit the website.




Having a mental illness doesn’t make you a genius



What do Britney Spears, Elgar, Jackson Pollock and Virginia Woolf have in common? The answer, should the question ever come up during a strangely morbid pub quiz, is that they all experienced bipolar disorder. That’s if posthumous diagnoses by media psychologists are to be trusted. Other artists touted as belonging to the bipolar club? Graham Greene, Dusty Springfield, Spike Milligan … the list is long.
Perhaps no surprise, then, that a new study says those with genetic risk factors for bipolar disorder and schizophrenia are 25% more likely to be creative. The results, however, depend on the sturdiness of the science behind those genetic risk factors and, indeed, what one even means by “creative”.












There is no definitive brain scan for bipolar disorder or schizophrenia; no swab, or test or sample that provides an affirmative diagnosis or otherwise. Instead, just genes with names that resemble number plates: ADCY2, ANK3, ODZ4, associated with exposure, but not causation. Bipolar disorder and schizophrenia are just sets and subsets of symptoms that hang together in diagnostic manuals, the DSM-V and the ICD, as are most mental illnesses.
I am aware that this is not the popular narrative. Instead, what we pay to see in the cinema, in countless biopics of tortured artists, is the poet, chain-smoking in his sepia study, grinding his fingers into his temples as the iambs flow, or the dancer, soaring on the stage, hallucinating in the wings.
That’s the acceptable kind of mental illness. The cool kind. The arty kind, the kind that comes with handsome, dishevelled hair and record deals, and brief stints in the legendary McLean Hospital. It’s not, however, for the majority of people with mental illness, a recognisable life. A mundane checklist of symptoms in a doctor’s office – suicidal ideation/feelings of emptiness/habitual crying – rather throws a more sober, bare-bulbed light on the romantic notion of doom.
I dropped out of school while studying for A-levels. Depression meant sleeping for up to 20 hours a day. It meant not showering. It was the heavy tick of the clock for the fours hours it took to leave the house, because I knew I was a piece of shit, and I thought other people shouldn’t have to deal with a piece of shit walking among them.












The times I did make it into class, however, I would be met with kids clutching Plath paperbacks, Nirvana badges pinned to rucksacks, their Liverpudlian accents oddly morphed into a Kerouacian drawl, reading verse about death and dying and the dead. Then, these kids wiped the kohl from their eyelids and went off to get degrees. I stayed in bed, remained a piece of shit. I still don’t have A-levels.
It’s not that I would want to dismiss any notion that mental illness is linked with creativity – the psychiatrist Kay Redfield Jamison has written an excellent book, Touched With Fire: Manic-Depressive Illness and the Artistic Temperament, arguing that there is a connection. So the concept itself isn’t a problem; rather, it’s the danger inherent in the tortured-genius trope that I object to. What about those with mental illness who work in retail, or are civil servants, or who pull pints? Do these people not get a look-in? How many albums does a person need to make, how many prizes need to be won before mental health issues become acceptable
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I wish as much money was spent on mental health services and treatment as is spent on the economy of mental illness as entertainment and intrigue – in the suicide tourism trade, or on paying actors appearing in Oscar bait.
Pity too, those with diagnoses not as fashionable as bipolar disorder.Schizophrenia, obsessive compulsive disorder – these ones aren’t OK, right? Those ones are a bit weird. Cross the street to avoid them.
Neither do I subscribe to the school of thought that medicine stifles the creative spirit. Medicine that doesn’t suit can cause muddled thoughts, but the right kind of medicine means a clearer mind, a more productive mind.
It was Dorothy Parker who said that “writing is the art of applying the ass to the seat”, and that’s a very hard thing to do in the middle of a manic episode. Oh, sure, it’s easy to splurge 30,000 words and think them the beginnings of a new Ulysses, but look back when equilibrium is restored and find that the genius hasn’t quite stuck. Likewise, ask the person in the full grip of depression how their concentration is; they will no doubt ask you to repeat the question.
Van Gogh put it best: “If I could have worked without this accursed disease, what things I might have done.”

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This Comic Perfectly Explains Why Anxiety & Depression Are So Difficult To Fight


Anxiety and depression are two mental health disorders that many of us simply don’t get. Nick Seluk, the artist behind the popular Awkward Yeti webcomic, partnered with Sarah Flanigan, a reader who submitted her story to him, to explain how dealing with these disorders is a daily struggle.
We all experience anxiety and depression at one point or another, but some of us experience these feelings chronically. It can be difficult for those who don’t suffer from these chronic disorders to understand those who do, so they can sometimes say some fairly insensitive things; “Why don’t you just get over it?” or “What happened? You were so energetic yesterday.”
“As someone who’s experienced and has been around anxiety and depression, it was easy to illustrate in a way that complemented the storyteller,” Seluk told Bored Panda. “Sometimes those who haven’t experienced the extremes don’t understand what it’s like, almost to the point of resenting it.”
More info: taptastic.com | theawkwardyeti.com | Twitter | Facebook (h/t: aplus)
Thank you, Nick Seluk, for talking to Bored Panda about your awesome project!



Please Wait for Me When Depression Makes Me Disconnect


Featured Member Post
I don't claim to speak on behalf of everyone who suffers from depression. It's a tremendously personal illness, and over the years I've noticed that those of us in the "depression camp" cope in very different ways. How we interact with our closest friends or partners is particular to each of us.
Our reaction to those around us might be influenced by the nature of our illness (whether we also suffer from anxiety, for example) as well as the ways in which we've learned to cope (whether with the support of others or without).
A clear and conspicuous characteristic of my own sloping dips into a depressive episode is the overwhelming need to retreat; to hide away. I'm sure you might recognize this if your depression persuades you to do the same, or maybe you recognize this tendency in someone you love and/or care for.
depression makes me retreat
Image: Ryan Melaugh via Flickr via Creative Commons License
The difference in what I consider my "normal" way of navigating friendships and relationships, and conversely in this desperate urge to physically separate myself from people and from the harshness of my senses, is striking. It is a manifestation of the sudden mental or emotional separation I feel, and the disconnect can be unbearable.
Usually, I am in no control of the severe changes in my mood. All I have to time to do, if I manage to be pro-actively aware, is to react to the fundamental shift in how I feel. For me, this shift may have no discernible cause at all; for you, maybe it's different. I'm not aware of any triggers, I just start to slide.
Being in the world can be painful sometimes, in a way that's very hard to describe. Senses begin to overload: sights and sounds accumulate. Everywhere I look, thoughts and feelings are prompted. They may be minor, even harmless, but my brain, the part that processes my thoughts at least, starts to feel raw and heavy.
I know that my illness has a hold on me right now, and I know that I am not myself.
Depression lies.
It absorbs and poisons and distorts the truth. I know that it is safest to hide away in the quiet and in the dark and let this battle pass. This is a great act of self-preservation. It overwhelms and the emotional noise can be unbearable. To grant myself the time and space to recover is a very kind gesture.
For those of us who retreat, while our minds are operating on the weakest of emergency power, against our wishes and our will, we are very unlikely to be rejecting our friends, family or loved ones during these times. An episode like this might last one evening, or it might last weeks.
But we are not passive, and we don't ignore or forget the important people in our lives. Our energy and our power is sapped; we are fighting, trying to stop ourselves from stumbling further down the slope we find ourselves on. We are trying to reach back up to where our friends, family and loved ones wait for us.
So please, look a little deeper.
So very often, when we appear cold, distant or disconnected, we are trying so hard to make our way back to you, and when we finally return, we can catch up with everything we missed.

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