Read part 2 of 'Rosacea and depression' here. 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."
“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 notice 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" his dad said, "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 recalled 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.” “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 recalled 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, cab 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 (ETS) 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. They 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.
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) The suicide of Brandon was also discussed on The Rosacea Forum. I also read more public comments under the articles in media on his death, and they were often rude and ignorant responses (stating that if thát was all that pushed him to such an action... dragging in worse diseases some people are suffering and insulting him). In the end, 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. Perhaps there might have been also an already existing (predisposition for) depression and anxiety, that fired all the distress up. I assume she had looked rosacea up online, had a read about the grim treatment options and long term diagnosis (no known cure, progressive nature) and stressed out perhaps. She might have suffered from the terrible pain and burning in her face, that some people with rosacea suffer from on top of skin outbreaks or redness. The burning nerve pain 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) Her 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.'
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 workplace, 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 makeup to cover the redness and most people become very self conscience, to the point where some will avoid social confrontations all together when they have a 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.
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. You can read in much more detail what I tried in the process of finding a treatment, and all the (sometimes lame and desperate) messages I posted on Rosacea Forums before and after this dreadful IPL treatment I received in this blog post. At the bottom of that post I also summarize everything I tried in the past, from acupuncture to traditional Chinese medicine and healing crystals. 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.
Reading about 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.
Realize that some anti-depressants can help rosacea in more than one way: certain antidepressants can help reduce flushing of the face and redness, and also reduce anxiety and depression which by itself can be rosacea triggers. Please check my more in debt post on rosacea (flushing/redness) medication here. I take mirtazapine (Remeron) - but there are more antidepressants that have a good record for helping with facial flushing, citalopram (Celexa), Zoloft and Effexor for instance. SSRI antidepressants in general can help, probably in a similar way in which they can help to combat menopausal hot flashes. People with rosacea also mention citalopram to help with facial flushing, redness and burning. Celexa (Citalopram) can help cut down on the facial flushing also anxiety, which can flare up rosacea in itself. Here is more on citalopram for rosacea. There are also antidepressants that can cut down nerve pain, like amitriptyline. Ultimately, I heard from my derms that mirtazapine is one of the best antidepressants for cutting down facial flushing. However, all antidepressants can come with side effects. Therefore I'd only take them for rosacea if your quality of life is really affected by flushing and burning and anxiety. There are also antidepressants that can cut down nerve pain, especially amitriptyline. The migraine and headache pain killer sumatriptan has also been used with some success (100mg up to 3 times a day). All these medications tend to come with side effects however, so make sure to always have them prescribed and discussed with the doctor.
My take on suffering and depression
I have dealt with different gradations of depression since my teens - probably more sullenness or melancholia in my late teens - and developing rosacea certainly didn't help. During my adolescence I started to develop feelings of melancholia and disappointment in the people and things around me. About the bulshit of people, as I saw it at least, the unpleasant human ways, the cynicism of the modern world, the inequalities of a capitalistic society, but also simply the annoyance (as I experience it) of group dynamics. My parents had divorced and my father taken to a mental hospital for some time, after not being able to cope with the break-up. It was not an easy time. But in my teens I had also good friendships and the freedom to explore, grow up, go out, spend weekends dancing in the city discotheques. Meet new people, travel and feel free in my body. Overall I was happy a good amount of the time as well. Unfortunately once I developed rosacea - in my case flushed burned up red cheeks - I lost that freedom. I felt caught in a cage as so many everyday things made me flush and burn. It was like a bad Kafka book, like a new room with low ceilings and impending walls that I could not escape from; very claustrophobic, yet this was my life now! Everything I used to love made me more red, which fired up my anxiety and depression. I tend to withdraw from social life when I feel like crap physically, so the fact this all hit me in my student years was just disastrous. But it was not until 6 years later that I had my worst year ever, after a failed IPL made my flushing unbearable. My beloved sister had also just died unexpectedly then from a missed appendicitis (through a medical blunder, resulting in a malpractice case) and my world was extremely dark and bleak. I couldn't leave the house or my ventilator and cold packs, even to get some groceries. I was looked at and laughed at for being maroon red. I became a shell of my former self and stuck in survival mode.
In that year I couldn't stop thinking about death. This seemed a living hell and I saw no light at the end of the tunnel. I was lucky to have a tremendously awesome dad, who did everything humanly possible to drag me through this. He would be on stand by on the phone, drive to my house at whatever hour of the day or night in case I was overcome with anxiety and hot burning flushing. As I said, that year my flushing was never ending and I had lost ALL sense of control over it; I was burning up from the inside and felt like set on fire, all the time unless laying on ice packs, which in the end fired back at me and irritated my skin and blood vessels. Dad would watch movies with me or let me sit on the back of his bike and cycle for hours out in the countryside for some fresh air and to get me out of the house. It was just a pathetic year and life. I couldn't see myself being so humiliated and powerless for much longer. I also felt that I had tried everything for my rosacea and that there was no way out in that respect either. When we called an emergency doctor at night, because I couldn't take my boiling face anymore, the doctor would say he did not know how to treat it, and referred me back to my GP. Dermatologists in my country did not know what else to do, after oral and topical antibiotics and IPL all failed to help. I don't think most people want to actually be dead, when they suffer like this. They want to escape the status quo. They want another life. And because they don't see any way to get another life, they want to take control back and end their current suffering. Dad and a handful of loyal friends would pull me through. My dad always pep talk to me and say that I needed to hold on to the small things. If I could enjoy something for even 15 minutes a day, may it be reading a book, watching a movie, listening to music or anything really, then I should cherish that feeling and see it as enough to keep going. And to never give up hope for future treatments or for things to otherwise improve. That reminder about the worth of enjoying something each day for even 15 minutes did help me, psychologically.
In that year I couldn't stop thinking about death. This seemed a living hell and I saw no light at the end of the tunnel. I was lucky to have a tremendously awesome dad, who did everything humanly possible to drag me through this. He would be on stand by on the phone, drive to my house at whatever hour of the day or night in case I was overcome with anxiety and hot burning flushing. As I said, that year my flushing was never ending and I had lost ALL sense of control over it; I was burning up from the inside and felt like set on fire, all the time unless laying on ice packs, which in the end fired back at me and irritated my skin and blood vessels. Dad would watch movies with me or let me sit on the back of his bike and cycle for hours out in the countryside for some fresh air and to get me out of the house. It was just a pathetic year and life. I couldn't see myself being so humiliated and powerless for much longer. I also felt that I had tried everything for my rosacea and that there was no way out in that respect either. When we called an emergency doctor at night, because I couldn't take my boiling face anymore, the doctor would say he did not know how to treat it, and referred me back to my GP. Dermatologists in my country did not know what else to do, after oral and topical antibiotics and IPL all failed to help. I don't think most people want to actually be dead, when they suffer like this. They want to escape the status quo. They want another life. And because they don't see any way to get another life, they want to take control back and end their current suffering. Dad and a handful of loyal friends would pull me through. My dad always pep talk to me and say that I needed to hold on to the small things. If I could enjoy something for even 15 minutes a day, may it be reading a book, watching a movie, listening to music or anything really, then I should cherish that feeling and see it as enough to keep going. And to never give up hope for future treatments or for things to otherwise improve. That reminder about the worth of enjoying something each day for even 15 minutes did help me, psychologically.
Below I share some stories I read in the media about people who suffered under unbearable pain and who chose another path than me. Who could no longer take it. I don't share them to 'inspire' anyone suffering from rosacea pain to go that same route. I urge everyone to exhaust all other medications/ treatments/options and to never give up. Life is precious and worth living, even when you suffer from daily pain. I don't know what happens when you die, but there is as good a chance that there will be nothing as there is a chance there will be something. And if there will be nothing for eternity after death, then life is the brief exception of that nothingness; something to experience, not to shorten even further. Life means chances for change. Death is the end. So I'd always try to keep going, try new things if possible to hopefully ease some of the physical pain. But at the end of the day, we cannot understand and 'feel' what levels of pain others around us are suffering and how much they can endure. I want to share these articles because they touched me and because physical suffering like this is not rare or uncommon. There are many people out there today who are bend down under pain, just like you might be.
In 2008 Duloxetine became the second drug approved by the FDA to treat fibromyalgia. Used to treat treat depression and generalized anxiety disorder, Duloxetine is also used to treat diabetic neuropathy. Duloxetine is class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs).
Diazepam/clonazepam - and similar calming anti anxiety medication has helped people with facial flushing as well. I have used it in the past but diazepam made me so dizzy and tired that it wasn't really for me. A friend of mine takes one tablet before having an alcoholic drink, very occasionally, and it helps blunt the flushing he normally gets from alcohol. Both medications and all 'pams' are typically addictive. Best not to use structurally and long term due to dependency and addictiveness.
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 weather and hot weather as well as oral presentations. Speaking a foreign language like english in front 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"
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.
I doubt those 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...
If you suffer from depression and are considering suicide perhaps even, please realize that things in life can always change. Always improve. That life is not guaranteed to be one happy road. Not for you, and not for anyone. We may have more challenges than some others, but things CAN be turned around. Things can change. Billy Joel wrote a song about this. Joel, who had once attempted suicide himself, stated in a 1985 interview, that he wrote the song as a way to help young people struggling with depression and thoughts of suicide. In his original draft, he was concerned that the song sounded too depressing so he re-wrote it with a bouncy, joyous beat and melody with lyrics that stressed personal forgiveness and optimism about life. Joel donated all the royalties from the song to the National Committee for Youth Suicide Prevention.
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 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 :) For those interested, here the documentary is discussed on The Rosacea Forum.
Understanding responses:
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. 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 paraesthesia
(like I do, not severe pain, yet, but paraesthesia-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."
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.´
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. Useless moron.´
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.´
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: ´I've 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 (literally, 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 dermatographia 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 articles and posts on rosacea and depression:
Forum thread Can someone help, I just can't take it anymore. "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 you feel. I have rubra faceii (some derm said it was more Rosacea) for nearly 12 years now. I must admit it' s an ultimate test to sanity. It 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 a pressure in my face (my nose is a little red, but it's mostly my cheeks). 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. It's 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 worst is 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 your 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 your mind every second. It's taking hours before going away and you are still stuck with it 24 hours a day. It's invading your mind like being brainwashed, you even fear mirrors, cannot concentrate properly, and you're praying every minute while being with people that the heat won't start or get worse. The only good time is when you sleep.
I replied: "What a very beautiful and touching post.. I can relate with so much what 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"
The notable English essayist, wit and clergyman, Sydney Smith (1771-1845) wrote in 1820, on learning that his good friend, Lady Georgiana Morpeth, was suffering from a bout of depression, advice for tackling it. His letter lists 20 wise, practical 'prescriptions' — all of which are relevant today. He explains: 'Nobody has suffered more from low spirits than I have — so I feel for you.'
Foston, Feb. 16th, 1820, Dear Lady Georgiana,
Nobody has suffered more from low spirits than I have done—so I feel for you.
1st. Live as well as you dare.
2nd. Go into the shower-bath with a small quantity of water at a temperature low enough to give you a slight sensation of cold, 75° or 80°.
3rd. Amusing books.
4th. Short views of human life—not further than dinner or tea.
5th. Be as busy as you can.
6th. See as much as you can of those friends who respect and like you.
7th. And of those acquaintances who amuse you.
8th. Make no secret of low spirits to your friends, but talk of them freely—they are always worse for dignified concealment.
9th. Attend to the effects tea and coffee produce upon you.
10th. Compare your lot with that of other people.
11th. Don't expect too much from human life—a sorry business at the best.
12th. Avoid poetry, dramatic representations (except comedy), music, serious novels, melancholy sentimental people, and every thing likely to excite feeling or emotion not ending in active benevolence.
13th. Do good, and endeavour to please everybody of every degree.
14th. Be as much as you can in the open air without fatigue.
15th. Make the room where you commonly sit, gay and pleasant.
16th. Struggle by little and little against idleness.
17th. Don't be too severe upon yourself, or underrate yourself, but do yourself justice.
18th. Keep good blazing fires.
19th. Be firm and constant in the exercise of rational religion.
20th. Believe me, dear Georgiana, your devoted servant, Sydney Smith
How sensible of him to suggest to the depressed Georgiana to spend time with 'friends who respect and like you'. To read 'amusing books' and avoid things that are likely to bring the spirits down. In other words, folks — ditch toxic people, depressing TV and stay off Twitter! When he advises 'short views of human life — no further than dinner or tea', he's tapping into that universal wisdom (from Buddhism to Mindfulness) which advocates living in the present. I like this: 'Don't expect too much of human life, a sorry business at the best' — because it's healthy to accept the shortcomings and disappointments we may experience, and to be realistic about what we can hope for. At the same time, he advocates fresh air, 'good blazing fires' (NOT advisable for rosacea patients!), making your sitting room 'gay and pleasant', avoiding laziness, keeping busy. Here are my favourites: 'Make no secret of low spirits to your friends, but talk of them freely — they are the worst for dignified concealment.' (Don't bottle it all up!) Then, for essential self-worth: 'Don't be too severe upon yourself, or underrate yourself, but do yourself justice.' He suggests comparing 'your lot with other people' —not to envy but because you may think yourself lucky in comparison (I keep creepy files with photos of some young people who died and whoms cases were mentioned in the media.... for when I am particularly somber and sorry for myself: see you stupid, you could be worse off, you are still existing at the moment, see that as an opportunity, you can be dead for eternity to come). And his first: 'Live as well as you dare.' 
“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.” (Source)
There has been written a good article in the RRDI website about rosacea and its psychological impact:Rosacea And Psychology
Feb 01 2011
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."
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)
Song about hope
If anything, I think people should find things to still enjoy, to hold onto, like loved ones, kids, pets, friends, work, talents, hobbies, music, movies, other things you still enjoy. And to realize that life is short and a drop on a hot plate in the big scheme of things, and that we should always try to hold on to it. To live it as it comes our way and to find the strength to deal with adversity. But these (by now) weekly or sometimes daily stories in the news of people taking their lives, show that we are not alone in our suffering. 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:
If anything, I think people should find things to still enjoy, to hold onto, like loved ones, kids, pets, friends, work, talents, hobbies, music, movies, other things you still enjoy. And to realize that life is short and a drop on a hot plate in the big scheme of things, and that we should always try to hold on to it. To live it as it comes our way and to find the strength to deal with adversity. But these (by now) weekly or sometimes daily stories in the news of people taking their lives, show that we are not alone in our suffering. 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. Article; "I want the evil surgeons name on my headstone"
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.
Nick wrote on May 31st 2010: "It's only a matter of time before I kill myself, because of the way my life has turned out due my Rosacea. I Know I'm going to commit suicide over this..."
MarkH replied: "Hey there mate. I know exactly how you feel. I to am 25 years 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 a time when i thot I didn't want to live another 60 odd years if i knew id never be happy. I used to say id prefer to have cancer because at least u either got treatment or you dont.It was the uncertainty of never knowing if id be cured that really annoyed me. But here i am 7 years later and I'm certainly glad i never followed through on my thoughts.Im by no means as happy as I could be but I'm definitely 100 times 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 a few bad days in arow and ill just watch a few 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 I didn'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 permanently 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.."
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." "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 patient's quality of lifeSome 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." And: "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."
The Psychosocial Impact of Skin Disorders: "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:
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 emphasized 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 materialize 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 distressing letter a skin disease patient wrote on a forum
"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 sebaceous cysts and the most severe dandruff you could ever imagine. I'm 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 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,
The Death of Frances Medley
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 deterioration too much to bear any longer She wrote a blog about her final decision: Musings of a Contemporary Spinster.
January 9th 2014This 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 emphasized 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 materialize 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."
"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 sebaceous cysts and the most severe dandruff you could ever imagine. I'm 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,
The Death of Frances Medley
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 deterioration 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 blog posts, 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."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. "
Patients with rosacea had a higher rate of depression and anxiety, especially men, based on a correlational study.
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 all out in their criticism. The interesting thing is that I copied that public facebook post and all its comments straight to this blog. Only once some vile commentators found themselves back on this blog, did some email me to ask to take their comments down. Sure sure.. I did, but not without saying that public comments like the disgusting ones some of them put online, can circulate for a long long time if they aren't careful.
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.
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