08 June, 2013

Rosacea and chronic illness; loneliness and envy of other people's normal lives

There´s a party tonight from friends and I should go, but can't be bothered with it, to put it bluntly. Well I am but feel just too tired and burned up right now. I am angry in return, for being stuck in my house once more. I know this flare will pass, probably around the time that the party ends, and I know that there are worse things in this world. I can now watch 2 more episodes of Game of Thrones and hopefully make it to a next social gathering - although they are not as regular anymore these days as ten years ago. But I feel crabby; why me again?  I help friends out where I can and try to get out as much as possible (either socially, seeing friends, going to places, travel or for long walks when the sun is low, although admittingly I don't always succeed in these attempts and succumb to locking myself up too regularly), but even then I always need to plan in ´down time´. Like some old woman. When I go into town with one friend, we usually stay there longer than planned and I tend to drink or eat stuff I didn´t want to initially. I´m usually relieved to be back home by the end of the day (even when I had a really good time, that´s usually not the reason) and to relax and unwind. Get my comfy blanket out, on the couch, put the fan on to cool my face and numb the constant burning nerve pain I feel, do some writing work and just ´chillex´ as one would call it in this day and age. Not something I'd typically, normally would do, probably, as I used to be high on energy and action. I used to plan multiple things in the day and evening. I never used to have to manage and control symptoms of a red burning face as a teenager.. I just lived my life as it happened and as it presented itself to me. Now when I go out the door, I either am lucky and arrive unflushed, but end up getting more red and hot and in pain as the hours go by, or when I'm unlucky I go to whatever appointment I have flushed and return home later even more burned up. Sometimes I can feel it is useless and I try to reschedule the whole appointment, if that's possible. For which I always feel lousy. Although I have gotten used to all this, it can still be depressing to think back of old times. The things in life I no longer do or avoid because of it. I know from fellow rosaceans that many struggle with similar feelings at times. Especially in this time and day, with such a strong pressure to appear happy, content, optimistic and effortlessly so too. People magnify their achievements and happy moments on social media, for those who have accounts there and can see the happy parade come by every day. We rarely see other peoples bad days anymore in the public eye.

It's a quite normal phenomenon I think for people who have a chronic illness: having the occasional feelings of envy or sadness over aspects of life that other people seem to take for granted. Its a really sad treatment suggestion to receive from your dermatologist, and one that's given quite often, to "just avoid your triggers". When your triggers are far fetched and rare, this is something anyone would probably do, in order to avoid a burning swollen red face. But for most rosacea patients with flushing and burning problems, such triggers are aspects of every day life, like the sun, warm outdoor or indoor temperatures, the wind, the spring air (pollen), beloved pets (allergies), your favorite foods and drinks (which makes most restaurants double trouble; too hot inside and no rosacea friendly foods) and so on. And even when you avoid all of them, you are still not certain that your health is going to do well. I know that some people have a very sunny, optimistic attitude in life, and seem to get on with things rather well in this same situation, eventually. But others might take things a bit more heavy handed. I tend to see the bright side and have adapted things and it has become the norm and normality, but I also suffer from spells of depression and it is more or less a daily job for me to get going, overcome the feeling of deep blues, and to feel at least neutral. I suppose almost everyone with a painful chronic illness might have spells where you wallow and simmer in feelings of discontentment. Sometimes these feelings are there all the time, for others they can be brief moments, for instance when confronted with specific struggles or disappointments in life. I developed tactics to pep myself up, mostly they have to do with work I really enjoy and get a sense of fulfillment and purpose out of. And surrounding myself with some lovely people who are a support and source of joy. But all in all, I still hate dealing with a burning red face, and having to revolve all of my every day activities around the state of my skin. I still miss my old lifestyle at times, which was much more free, spontaneous, adventurous, and I miss having the options to opt for another route in life, if I would want to. Instead I am pretty much rooted to a ventilator and the possibility of having cool enough air flow; either by going to a cool enough climate, or having access to an air-conditioning system. Despite having grown used to this lifestyle over the years, I still often feel grumpy that since I developed all this in 1999, the expected medical break through for all this still hasn't been made. But some good things have come out of this rosacea disaster too. I am more or less forced by circumstances to a calmer lifestyle, with more room and attention for things I always had a passion for, especially books and arts and movies and correspondence with some interesting people. I also managed to hold on to some long standing friendships. I am not really caught up in a rat race, as some friends and relatives of mine do.

Ego is a strange one and luckily mine has shriveled down quite a bit, but I still worry sometimes that people I know from my school days for instance, stumble onto this blog somehow. Stressing about which people will read a public blog post kind of defies the whole purpose of it I suppose, but there it is. I don't mind total strangers reading about my inner struggles, but this blog is really only meant for people in the same boat as me, either by having rosacea as well, or another flushing condition or a chronic pain problem.  

Some of the most important things to achieve, once you are struck with a chronic illness, is probably to get as much information about your condition as you can; to find a good doctor who is willing to help you and think outside the box when needed, and to start looking for the right treatment option for you. These are rather proactive things, but equally difficult for most are the social and psychological challenges that a chronic illness can pose onto you. In a society where people deem almost everything feasible through dedication and willpower, it is often tough to acquire understanding and sympathy from your busy bee friends. I remember that in the first years after my rosacea started, I would feel the same, all consuming burning pain in my face as nowadays, however back then I didn't look as red as I can do now. So most people around me thought I'd lost it. To have to suffer that way and consistently been told, even by the GP, family and closest friends, that you are obsessing over a mere blemish, was utterly depressing and lonely. I knew deep down something was truly wrong with my skin/immune response and that this would haunt me for a long time to come. But the people around me seriously challenged my mental state and kept saying I shouldn't look in the mirror and that there was nothing wrong with a healthy looking blush. If they couldn't see a nasty glowing red on my cheeks, there couldn't be any burning either, they reasoned. Of course this is not always the case with rosacea, and there are other conditions that can cause painful burning skin sensations, for instance erythromelalgia and lupus, or any other condition that affects the nerve endings in the skin. Then there were the extreme tiredness (still having spells of that), accompanying colitis, Raynaud's and other related inflammatory issues and me trying to get some control back on everything.

I wrote it before, but one of the tricky things of rosacea in my opinion (and especially with subtype 1), is the strong fluctuations one can have daily. It really is the ideal recipe for obsession, anxiety and paranoia when you aren't careful. I think most patients will initially go through phases where they suspect anything and everything to be a potential trigger. It's so tempting initially to just try to avoid all triggers altogether, hoping that after some symptom free time the problem will just go away again. This is part of the loneliness issue the disease might bring on, if you aren't careful. I´ve been reading online about this topic and hoped to find blogs or webpages from people in a similar kind of situation. How to deal with limitations in life, the isolation and the loneliness this disease brings for most people who suffer from it? There are many blogs out there from vocal patients with all sorts of chronic illnesses. I selected some statements below that I could relate to a lot.

Melissa wrote a beautiful post 
on this topic and acceptance recently on the rosacea forum. Here is a quote:

"For me, it all comes down to attitude and knowing that while I may not be able to control all aspects of this disease I can control how I react to what is happening to me. This is very hard for me because I am the type of person that likes to, and in fact needs to, be in control. Rosacea has taught me a valuable lesson that I continue to learn each and every day. I cannot always be in control. But the one thing that I can always control is how I react to it. And while that may seem like a small thing to some it really is huge and makes all the difference.I made a decision after my initial depression over this disease when I felt like becoming a hermit and hiding away from the rest of the world because of what was happening to me. The embarrassment of my face being so red and the pain associated with the burning was overwhelming to me and I just wanted to hide away forever or until a cure was found. However, after that dark period of time I decided I wasn't going to let rosacea take any more from me than it already had. I couldn't control everything about it but I could take back my quality of life and enjoy all that life had to offer despite having rosacea. Sure I had to compromise on some things and I had to learn to work around some issues regarding my rosacea symptoms so as not to exacerbate it too much but independent of those small changes and compromises I took my life back and with it a feeling of control and power and joie de vivre. Sure, things still get tough sometimes but I always remind myself how lucky I am and all that I have in my life that so many others do not. Rosacea is no longer the boss of me and I will never let it be that way again. What choice do we really have? To hide away from the rest of the world is an all lose situation. I always say that rosacea really weeds out your "fake" friends from your true ones. It can be a huge plus in that respect. Rosacea and experience in general has taught me that life can be hard and that life can be short and I am not going to waste my time with people who aren't worth it. I would like to quote my dad (again I have quoted this saying of his many times here but for the people who are new to the RF)-my dad once told me when I was a little girl and sad about something major (in my view) that everyone has something. "No one gets out of this life alive" and darn it if he isn't 100% correct in this. As I get older I see how true that is."

Jody wrote about the struggles that come with living an isolated life (she doesn´t have rosacea but she is single, works from home and is child- and pet free):

'I had chosen to live alone after several years of renting bedrooms in other people’s homes post my divorce. I also chose not to be in a relationship having been in one almost continuously since I was a teenager (including being with my ex-husband for sixteen years). But I didn’t choose to be childless, petless or to be working alone at home.  Things happened – a business partnership went sour, my landlord wouldn’t allow pets, my infertility and unwise choices in partners post-divorce left me childless. It was possibly the toughest period of my adult life, and I thought my divorce was as bad as things could get. But nothing prepared me for the sense of dissolving into oblivion that I experienced in that isolation. It made me understand why solitary confinement is used as a form of punishment. When I’d go out for a drink with friends I’d encourage them to talk about their own lives as much as possible, and when they’d protest that they had been talking about themselves too much I’d say, “No, please carry on! You’ve no idea how bored I am of the inside of my own head!” And I meant it. Solitude and isolation are very different beasts. I have always loved solitude, and was happy playing alone as a child as my imagination was pretty good company. But isolation is different – isolation is unchosen. However, with the support of a gifted therapist, and the insights gained from my ongoing training to become a psychotherapist, I weathered the storm. And when I surfaced I found that the void was nothing to be scared of and that, rather than engulfing me, it actually contained power, joy and creativity. Making space for this darkness in my life regenerated me in a profound way.`

She also posted a quite crafty and touching youtube video about how to be alone. Not that I would advice you to be alone or to chose to be persé, but often we can't avoid it during flares, so it seems best to at least feel comfortable about it:


And the second video is a nice French short film on shyness. I never used to be shy but I recognize some of the things in this video since having rosacea -and becoming socially awkward because of that- (option for English subtitles, watch the video here and press first icon on the right lower half):

The thing I struggled the most with for a long time, was finding a sense of meaning. Eventually I found a way to live, work and behave socially around the health issues. I´m not always happy with that status quo, but I accept it and manage to keep a circle of close friends, most who I have known for many years, and to even meet new people occasionally. Not too often haha, I have grown a bit set in my ways and grew shy due to my erratic face flushing. And I learnt to keep doing the things that I love, within reason. I accept that my lifestyle might not always be as fast and furious as I´d wished it to be, and that I spend way too much time indoors for my age, but that at least I have the feeling that my life goes a lot slower now and that I can therefore enjoy and observe it a lot longer. But it still can make me sad at times to miss out on some things that I would naturally have looked for and enjoyed. Either a more adventurous life, or a family situation. I struggle with choices and fear to make the big decisions nowadays, blaming it on wacky health. Which isn't even that wacky compared to some patients with far worse diseases. But comparing yourself to others isn't going to change the day to day struggles you might have with living with rosacea. I realize that rosacea can become very debilitating for some. I have very bad periods still where I am constantly inflamed and red and flushed and suffer greatly to be frank with bad burning and the feeling of being burned from the inside out. It's no life if you have that continuously. I am lucky enough that some medication is helping me to also have some good periods again, where the burning pain is more controlled. But things are far from stable. In the end, rosacea luckily can be managed for many and isn't a death sentence in itself. But there are many grades of severity and what rosacea skin looks like on the outside, does not always reflect how much pain it gives a person on the inside. When I risk making my rosacea worse, my fear is still all encompassing, directed at a loss of control and the fear of making matters permanently worse. The fear of not just risking something transient, but that I risk making things really bad, not having the
medications or treatment or even tools to control it again. I don´t mind having badly swollen and painful knees at night after long walks, I don´t mind having my ear operated on 3 times now to get rid of inflamed cartilage and I don´t even mind that much about having an irritable and easily inflamed bowel. They are inconveniences at worst. But like all of you with rosacea, it can seem unbearable to have a face that feels like its splashed in acid and is burning you up. It´s by far the worst type of pain I had so far, and perhaps I am lucky that I can still say that and never had to deal with other real horrors. But nevertheless, I find it tough to be on fire and having it on display for the whole world to see as well. So, everything that can make it worse easily becomes an issue in my mind. Getting my wisdom teeth pulled means weeks of research on the risks and effects on rosacea. Starting a new medication; ditto. Going on holiday to a foreign country; I can´t risk getting more vaccinations after the hepatitis jab I got 11 years ago made my rosacea heaps and heaps worse and triggers and stimulates my auto-immune conditions. So no obligatory vaccinations for the destination and it can´t be too hot and humid either, nor too wet from rain. And then there are the bigger dilemmas of course. How can we feel we live meaningful lives when there are so many hurdles and limitations, and how can we not feel like a burden to others? How can we be content and feel like we achieved things, when there is also so much discontentment in fact?

Some of you might have a religion to find support and solace in. It's only human to want to discover meaning and sense in the things that happen to us. Once we know we don't suffer in vain, or for the sake of it, it might be easier to carry. If you aren't religious, there might be other ways to find meaning in it all (although I am skeptical myself if there is any meaning at all to suffering, I think it's mainly a case of bad luck, bad gene combinations perhaps and something one must endure and make the best of). My mother believes that all of us have a specific challenge in life. In her opinion it might be related to struggles you had in a past life or something that would be most difficult to conquer in this life. In that respect, rosacea would have really been the ultimate non life-threatening illness of choice for me, given that I was always obsessed with having perfect skin and feared getting eczema (had that as a child) or anything similar on my face. I used to dress myself like some 18th century doll, face all white, red lips, dresses, skirts and spent an hour a day at least on make-up and hair. Gone now. I can't wear make-up anymore as it burns and flares my skin, I look very different after years of facial inflammation, medication and also simply from no longer having all that make-up to paint with. But perhaps you become more yourself, when stripped of all those layers. I no longer mind any of it now. But it was a hard road when I was still in my early 20's. I felt a great sense of loss back then, loss of my once perfect skin, effortless figure, and most of all care free spontaneous life. I like the idea my mum has, of having challenges and struggles thrown at you -like the ancient Greek gods did on a regular sadistic basis, high up on their clouds- and you having to succeed. To see it as a challenge of will power of sorts. I liked the movie La Vita è Bella for that same reason; impose a greater purpose to suffering, one way or another, and make it into a game you have to win. Winning here, in our situation, would be successfully accepting things as they are, finding a way to life with it, despite it, succeeding to achieve the main goals you set up for yourself despite it all or to just have some fun and enjoyment after all.

What would be the best way to find acceptance towards this fate that we had thrown at us? Apart from trying out every treatment option you are willing to test. Like Melissa wrote, a great deal of good can come from simply accepting that this is your struggle and trying to find the spots of light in it all. Nobody promised us that life would be wonderful, or fair. Life tends to promise us nothing, and if it does it tends to whim-fully take it away again. For me personally, lowering my expectations has been half the battle. I also try to focus, in general, on my blessings in life. Think about how I don't have a selection of other dreadful diseases (although I do have some other ailments, but not the worst ones possible). That I am lucky to have a great partner, friends and parents who support me, or at least try their best. I hope that you who is reading this is in a similar fortunate situation. If not, perhaps try to be patient and calm when explaining them (repeatedly if needed) about your condition and the importance of their understanding and support. When you involve people in your stride and give them the chance to be there for you and to do fun things within your health limitations, people often feel less powerless and inclined to back off.

Try to explain what you are going through to people close to you, so that they can hopefully understand what you need in order to deal with this yourself. You might have a nice job or studies that you enjoy and excel in. There are still numerous of things that give us joy and that we can experience, depending on how severe and debilitating your rosacea is. I am talking from a near housebound point of view, but I realize most people with rosacea can function a lot better in every day life, and have more control over their skin. So even though we have to be careful about triggers or bring cooling aids with us. Life isn´t all about the shiny happy perfect pictures people post on social media. It is a fascinating place and when you look for it, there are beautiful discoveries around every corner. You don´t have to feel great every day; it´s entirely normal to feel grumpy and sad over the challenges a person with rosacea might have to face, both physically and mentally. But freedom is only experienced when there are boundaries. And without pleasure we feel no pain either. Jason Mraz sang a song about this and the lyrics always touch me.

Some people actually say that once they became ill, they started to take notice of, and found more joy in, the smaller and more simple things in life. I know this might sound mushy and like a cliche, but our own perception of things has a big impact on the way we feel. Of course some people have been blessed with a natural sunny, optimistic outlook. And others struggle with depression and anxiety, on top of the rosacea. But for me personally, it helps to focus on the things I can still do, and enjoy them more than I normally would have. Work around triggers and do as much enjoyable things as possible. Travel if possible, meet with friends, write a book, take up a study, be the best you can be at work. Read as many of those wonderful books that are out there, even though you know you will realistically only be able to read like 0,2% of them (William Gladstone claimed he read 22000 books in his lifetime but if you read 200 great books, you already achieved something significant). Connect with like-minded people. Write with other people. There are so many interesting things out there to learn about, dive into, master yourself in. In the good old days, people had actual time to become a great writer, craftsman, connoisseur in several things. Think of Leonardo da Vinci perhaps, a 'L'uomo universalis', excelling in arts, architecture, science, music, design, astronomy, biology and what else not. Nowadays, life flashes by before your eyes, people are sucked into multimedia easily and too busy or tired to really learn such a host of things. I'm not saying you should, but less options can also be an enrichment and an opportunity for creative/intellectual challenges. You might miss out on some of the social hustle and bustle, but that doesn't mean that you can't make new and hopefully even better uses of your time. And we don't all have to be socialites, be seen shining in the public eye regularly to feel we established our existence or to feel we lead meaningful lives.

If you don't (or can't) work, consider helping out part time in charity work. It can give a great sense of contentment and self worth. Be a great parent if you have kids. Try to stay part of the lives of your friends, even though you might feel you have not always the same to offer in terms of happy chattiness and stories at some moments. You might have become a lot more perceptive now of the suffering and problems of other people (and have become a better friend in that respect yourself). You might be able now to not just grasp but actually feel the depths of some songs and books, knowing first hand what it is to struggle and suffer from things that are out of your control. You might have a new found perspective on problems and how relative some other problems turn out to be. You might have finally found an unavoidable reason to start eating healthy foods and limit the alcohol consumption ;) You probably learned how strong you really are and that you are able to deal with these health problems, even though we all have good and bad days. I once read about rosacea, before realizing I had it myself, and remember vividly the shock of reading patients testimonies, thinking No, i would never be able to cope with thát. That would be my worst nightmare. I was still convinced that I had some sort of illustrious allergy by then. But I do manage rosacea for a long time now, even though it's no fun. And you might have learned to listen more closely to your body and to not take it for granted. Our bodies deal with inflammation issues and we have to be kind to it, as much as we can. And to ourselves, for dealing with it all :) Rosacea tends to flare and wax and wane. Take each day as it comes, and if you have a very bad day, try to make the best of it and cool your face down as much as you can. Remind yourself that things will calm down again and to sit the flare out and allow yourself to be unhappy about this, but try to keep in mind that the flare will calm down too. The less stressed and anxious you are, the sooner this will be.

Also, a great deal of support and even friendship can be found on the forums that are out there for your specific chronic illness. I have linked to The Rosacea Forum maybe times already, but I've been reading and posting there for the past 8 years at least and it's a fantastic, friendly place of both information and support. I also like the Rosacea Support Community. But don't beat yourself up for still feeling alone and struggling, despite it all. Illness is a solitary battle. We can tell our loved ones what we are going through, but no sympathy will make them truly 'get' what we go through on a regular basis. Some people have mild symptoms, others have very serious symptoms. But as goes for most patients, you ultimately go through pain alone. Just like everyone will eventually die alone. It can feel like a great support to be in contact with people in a similar struggle. Through forums, penpals, friends and so on. We are lucky in a way to live in a worldwideweb, digital era. Jane Austen spent a lot of times stuck in a house in the middle of nowhere, wondering out of her window, having to make long journeys to reach a decent library. We just open our computers or I-devices and have information and fellow patients available. Those who have the same health problems will understand each other easily, whereas we often want to protect our near and dear from daily ramblings and complaining when things are rough.

You don't always have to grin and bear it. I personally pretend nothing is wrong with me towards acquaintances and anyone I'm not really close with in every day life. I hate the feeling of not getting any sympathy or interest back in return when I do tell about my health problems. I like openness, but you just don't always get back in return what you would have given yourself, had the shoe been on the other foot. But in all reason, ask yourself (before becoming disappointed with the people around you); how many of us would have been totally open and emphatic and interested for long periods of time in the illnesses of others (apart from your closest friends and family), if we had never fallen ill in the first place? Had über busy lives, parties to attend, dinners to host, kids to drive around, jobs to excel at, friends to entertain and, so, on?  I guess the answer depends on each individual.
But often it's just the way things go in life. Perhaps illness will give you a reality check about who your best friends are. It's not a nice test but it comes with the deal so to speak. The true ones, the real
ones, will stick. As long as you keep confiding in them and won't push them away. Good friends also stick when you take some time off to wallow and come to terms with your new found reality. But there comes a point where you have to pick up the thread where you dropped it and invest in the people and things that mean most to you in life. Even when you feel ill. Make a shortlist for yourself perhaps, of the things that used to make you most happy in the past. And how many of them you can still do or pick up again now. Include friends, family members, activities, leisure etc. I love live music for instance. So I still attend the concerts I love to see, even if that means bringing a bag of ice cubes with me and being sore for some days afterwards. Or I focus on open air concerts and festivals. Slap on the make-up if you can and go out with your friends now and then. Have fun, ignore the rosacea where possible for some nights and recharge.

I have some very close friends who I know from childhood and adolescence. They weren't as supportive as I had hoped in the early stages of me struggling with my health, but I chose to not sulk and withdraw from them, but to give it time and stay in touch. Now they are the most caring and understanding people, setting the central heating on low without asking, surprising me with ice cubes in the fridge without me mentioning it, having foods in the fridge that I can handle well and never getting upset anymore when I - every now and then - can't make it a full night. It took some patience though, but the good friends will hopefully be there for you, as long as you keep them involved in your life. But anyway, if all this positive thinking, the (mild) exercise you should start taking and all the acceptation efforts and inventive reinventing yourself don’t work, and you keep feeling miserable, please consider trying an antidepressant. Sometimes a relative short time of use can be the boost you need to climb out of your depression and to face things in a more positive and less apathetic light again. I used to take 30 mg of remeron at night and remember the sensational, cloud lifting feeling I experienced after some weeks. Unfortunately for me (but this seems to depend on the person) it works a lot better for my flushing at 15 mg (or 22,5 if I want to stretch it). And at that starting dose it doesn’t have heaps of antidepressant actions, although any anxiety I once had is gone. But a lot of antidepressants actually help with hot flashes and rosacea flushing and redness. Please read more on that in this blog postYou might also feel a bit better after watching Le fabuleux Destin d'Amélie Poulain, which also deals with the small things in life that mean the most.

And here is a beautiful homage 
to imagination and curiosity:

More stories from people with a chronic illness, battling their social and emotional implications:

Kimberly McBride suffers from fibromyalgia: "It became an endless cycle of pain, loneliness and shame. Many who were once close to me tired of seeing me deteriorate and they could not adjust to my new limitations. After all, it wasn’t as if I had cancer or some horrible disease that would justify my absence at family functions, my extended bed stays and my crying spells. More and more I felt guilty for being sick, for showing any signs of pain, because I knew that they were right; there were so many people in the world suffering with diseases that were inevitably fatal. Therefore, I withdrew from everyone. Slowly, my world became lonelier and felt more and more like I was a burden more than a person. [..] Then one day when I was feeling like I was feeling particularly futile, I decided to do some research. I was astonished to learn that over one million Americans suffer from chronic, debilitating illnesses, many of which are overlooked, misdiagnosed or misunderstood by the majority of physicians. I found that I was not alone in my feelings of despair. In fact, it is uncommon for someone with a chronic illness to not experience emotional, relationship, and financial problems."

Here is a post from a woman with fibromyalgia about dealing with emotional struggles.

Nicoletta Skoufalos wrote about the psychological struggles with lupus.

Psychology Today about curing the loneliness of illness and the importance of companionship.

Wendy Burnett (fibromyalgia) about (Chronic Illness) = Loneliness + Isolation, and the loneliness of pain.

Lana (who has rheumatoid arthritis (RA) and fibromyalgia (FM) ); Chronic illness is as lonely as it gets.

Sapphire tells on youtube how lonely she is due to her chronic illness. (And how much she would like
to drive on the back of a motorcycle, but never gets invites anymore, cause she has a chronic illness, and well, she doesn't want to be on the bike of a drunk or a male sexual pervert which sums up almost all the bikers she thinks :) Touching video.

Michael Stein M.D. on how we experience illness; The Lonely Patient (hour long lecture on youtube). There are lots and lots of video's on dealing with chronic illness or rosacea on youtube, for those interested.

Here is an interesting and honest blog entry about the emotional aspects of living with an illness, including (in red) Bible quotes to help the writer deal with every aspect of her struggle (including fear, anger, envy and discouragement).

Jess asks, 'Why does chronic illness and loneliness always seem to go hand in hand? Why do people abandon the sick?'
Even wikipedia confirms that women with a chronic illness suffer from loneliness

Posts from people with rosacea, battling loneliness and anxiety:

Here is a discussion about the struggles patients have.

Post about dealing with rosacea and wanting to shut oneself off from the world. 

Togaman writes about the effect of rosacea on his social life.

Darild writes about  'Why Me?'

Here is a rosacea blog entry about Rosacea and the Workplace

And here a blog entry from a patient about LIVING WITH ROSACEA

Aww what the heck, I just found out the youtube link option, here is a song I really like from a Danish band called Saybia, with quite appropriate lyrics as well, and another song from its singer, Soren Huss. The lyrics of that Danish song are very depressing, he lost his girlfriend and the mother of his daughter in a dramatic road accident, but you wouldn't notice the grim lyrics based on the melody.


Update February 3rd 2014:

A friend shared an interesting article about dealing with chronic illness and sense of loss.

"JoAnn Le Maistre received her Ph.D. in clinical psychology, delivered a daughter, and learned she had multiple sclerosis all within the period of a few months. Dr. LeMaistre has developed a successful practice counseling patients and their families. She is a sought-after speaker, lecturer, and teacher. Her books, After The Diagnosis, and the hardbound edition, Beyond Rage, have helped thousands of chronic illness patients, their families, and health care providers to cope effectively. Her daughter has now graduated from college. And Dr. LeMaistre has learned to live a full life, in spite of the handicaps of her MS. She is an inspirational example of what it means to be able-hearted when you can no longer be able-bodied.

Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness. The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the "miracle" of modern medicine, and somehow the lack of recovery is often perceived as the patient's fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. You simply must adjust." Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word "adjust" too often means "resign," "settle for less than a desirable existence," and "surrender." At its worst, "adjust" is just another way of saying "You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope." All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.

The Pollyanna approach is typified by -- and fueled by -- personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. Besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma.Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help. The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality. The approach I propose took shape as my own understanding developed. My experience as a patient, observer, and psychotherapist has allowed me to see the many ways in which people creatively adapt and use their individual internal powers of wholeness (the sense of being emotionally intact) to reduce the destructive effects of severe physical limitations and accompanying depression, rage, and fear. The wellness approach I present stresses both the subjective experiences of loss and your responsibility for looking outward to reestablish quality in your life.

Central to wellness is the concept of adaptation -- the flexible, creative use of resources to maximize your choices and experiences of mastery. This is the key to creating and sustaining a sense of inner tranquility in the face of difficult realities. There is no need to deny grim facts of existence or to pretend to others that all is well when inside there is little except torment. To be psychologically well while physically sick involves the belief that your personal worth transcends physical limitations; you need positive self-esteem for true adaptation. This belief in your self-worth rarely emerges until what you have lost and grieved for stands second in importance to precious moments of inner peace and joy. Each stage in the progress toward wellness involves loss, grief, and acknowledgment of internal pain. During difficult times, emotional pain can engulf your life. All sense of time and proportion fade. The scope and intensity of the psychological pain fluctuates day to day. At times, it carries you closer to invaluable inner resources. At times, like a dangerous undertow, this pain drags you far from your recognizable self. It may seem that you have no reason for living or that you are living only to experience pain. Even so, the reason for living is life. The incentive for becoming psychologically well is the potential for the future.

Illness is an emotionally as well as physically depriving experience. It can do lasting harm by threatening a person's sense of well-being, competence, and feelings of productivity. At their worst, emotional reactions to illness may culminate in the feeling that life is meaningless. I do not share this belief; but I recognize how stress can make you feel this way. Illness is a process, and like all processes it has different stages with different characteristics. We will discuss the stages below. The stages can occur in varying orders; often they are repeated. If a sick person lacks emotional support or a necessary feistiness, the process can stagnate, and one may be mired in one or another phase of the emotional transitions taking place. The emotional process begun by illness is a highly varied and individual one. Not everyone gets bogged down. Not everyone experiences all the stages discussed in the following sections. The stages are not part of a once-through program, but are repeated as symptoms recur or losses come about. The level of adaptation is an upward spiral in which coping mechanisms, learned one at a time, can be combined with strategies learned at other times to make each bout of illness less emotionally upheaving. How people react to chronic illness depends on many conditions. Three deserve note. The first is the severity of the illness. The very sick must put all their energy into healing and may not have the luxury of energy left over for emotional growth. The second is the social support available. If you are willing to ask for help and you have a wide support network, you'll have an easier time than if you are isolated. The third condition is the preillness personality of the person. If you have always been pretty resilient, you are likely to have resilience in coping with the illness.

The emotional trauma of chronic physical illness is caused by loss of a valued level of functioning, such as the ability to drive or dance, for example. The chronically ill person not only suffers the loss of immediate competency but is deprived of an expectable future. No one's future is ever guaranteed, but most people become accustomed to looking at the odds; if I invest my energies in a particular direction, I can be reasonably certain I'll reach a desired goal in that direction. When illness intervenes, all past efforts may seem irrelevant -- and in fact they may be. In the face of such losses, to experience fear, anger, depression, and anxiety is normal. It would be abnormal to deny that your health and your life had changed for the worse. Serious emotional difficulties are more often the lot of people who do not acknowledge the emotional stress they feel and thereby bottle up depression or anxiety until these feelings are so powerful they break through their defenses. By the time an emotion becomes this powerful, it is much more difficult to survive its impact without severe scarring. Is there anything that can help overcome the displacement and depression caused by physical loss and the loss of goals and dreams? I think the answer is an unqualified YES!Goal-oriented striving, any experience of mastery, any outside acknowledgment of competence, a well-tuned sense of humor, any experience of joy, and the constant striving toward an inner state of tranquility are the aids that help overcome the displacement and depression of chronic physical illness. These aids are of critical importance in the stages of the ongoing emotional process. I identify these stages as crisis, isolation, anger, reconstruction, intermittent depression, and renewal. These are good summary categories for the whirl of emotions triggered by illness and we will take up each stage in turn, although in the course of an individual illness they may not always proceed in this order.


In the crisis stage, the patient is seriously ill and very frightened. Both psychologically and physically he or she has a decreased ability to respond to others. The sick person's energies are directed inward toward healing, and controlling panic. The patient is often too sick to even be frightened. Events are often confused. Time is distorted. Disorientation is common. At these times we fall back on our innate biological ability to heal. The support network, on the other hand, is feeling a highly stressful increase in anxiety, especially as it must carry the full responsibility for arranging for medical care, covering finances, and seeing that children's lives, if children are involved, can go on with a minimum of disruption. The family's anxiety can be energizing. The family may feel a need, sometimes an obligation, to be highly supportive of the patient. By and large, everyone responds well in a crisis. Everyone knows the patient is terribly ill. And they respond. Unfortunately, those most affected by the patient's illness do not always receive the support and help they need at this time. Friends sometimes respond by showering the sick person with cards, flowers, and get-well-soon wishes. Unfortunately, much of this is misdirected. The very ill person often cannot appreciate these signs of concern and affection. Patients often feel burdened by all the thank-you notes they cannot send. Friends can often do more by helping the family and other members of the support network to deal with the medical system, the incoming phone calls, and to give direct support when it becomes clear that the idea of "get well soon" has no relevance to chronic illness. During the crisis stage almost all of the patient's energy and attention are focused on responding to the physical onslaught of the illness. Surviving is the primary concern.
In addition, the patient and the family must cope with the fear of an unknown and unknowable future. It is all too clear that the comfortable patterns of the past have been shattered. It is not clear at all what may lie ahead.


In time, the acute nature of the illness may abate. But total recovery does not occur, and the illness persists. There is a dawning awareness of everyone's part that the situation has become a chronic one. There will be no full recovery. There is so much uncertainty about the future that the patient may not be able to sleep at night and may seem restless and distracted during the day. The lack of an expectable future constitutes a major assault on one's self-image. The patient's anxiety often produces a stiffness or frozenness in dealings with others and oneself. There is a belief, usually partially justified, that no one can understand the devastation of the losses. Isolation most troubles patients who have been the most independent. The family has often exhausted itself during the acute crisis stage. Family members may become aware that they are angry, fearful, and disgusted about the sick member's situation. Both patient and family members retreat into themselves and their thoughts, now haunted by the knowledge that life may never be the same. Friends also tend to give out at this point -- the idea of chronic illness is really terrifying to most people. After an initial burst of energy, some friends may find it too overwhelming a personal struggle to continue having contact with either patient or family. Some patients have been devastated by an apparent lack of concern shown by people for whom they care. I say apparent because often failure to contact the patient means that friends may care but don't know how to act. This leads to a thorny question. How comfortable are you in asking for help? What does it mean to you to have to ask for help? These questions begin to surface during the isolation stage, but actually they are part of everyday living for most chronically ill people. To feel really comfortable allowing others to help you is an art that must be learned and practiced. It is difficult to understand that relying on other people when it is necessary does not indicate weakness or failure. One of the emotional barriers to asking for help is a strong feeling of guilt about having a disease that makes one need help. During the isolation stage, patients look inward and experience many negative feelings about themselves. In the isolation stage open communications are vital. Blame must not play a part. Talking about feelings is very important. Communication and sharing are ways to break the isolation.


The sick person has been suffering severe upset, terror, anxiety, and helplessness. Add to this the sense of injustice, unfairness, and senselessness of being struck down by a disease, and the result may be a rage reaction of tremendous proportions. Often the target of this rage is the patient himself or herself. The ultimate, most dangerous, expression of this rage at self is suicide. The commonly experienced feelings of despair may result in contemplation of suicide. There are two reasons why the patient targets himself or herself for these feelings of anger and despair. First, it is almost impossible to be furious with fate; there is no external opponent. In order to provide some meaning for what has happened, many people irrationally conclude they have bought disease on themselves by being faulty or wicked in some way. It is difficult to keep clear that it is the disease that introduced the disruption into one's life. Another reason for suicidal thoughts is that illness breeds a sense of helplessness. The chronic disease cannot be wished away. The disabilities are there to struggle with every day, and the threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from consciousness. With the feeling that the underlying problem cannot be solved and the belief that it is the patient's fault, many patients suffer intense unhappiness. Sadly, the patient's feeling of self-blame is greatly reinforced by society. Often families are unable to help because they are angry at the patient. The changes in their life style are directly attributed to the patient and not to the patient's illness. Even supposedly neutral medical personnel may be furious with the patient for having a chronic condition they cannot cure. This anger directed at the patient from all sides is psychologically understandable but it is very destructive. The flirtation with suicide, the patient's worst hazard of the anger stage, is a statement of the extent of one's rage with oneself and with those one cares about. Another serious problem of the anger stage is the strain on the family. Families who fare better during this stage understand that the sick person is not the same entity as the disease and they see that the whole family is in this predicament together and are committed to coming out of it as well as possible. Family members need to devise ways to nurture and adequately support each other in order to cope with both the anxiety and the practical life changes accompanying chronic illness. Anger is the stage most hazardous to your emotional well-being. It is also where most people get trapped. Fear and anger are disruptive emotions egendered by a sense of loss of control. Take back control in small steps. The basic reasons for the anger, in most cases cannot be avoided. It does no good to assign blame. The response must become task-oriented. "Today I will walk the length of my room, or call a friend, or answer one inquiry." Striving toward a goal, even in small doses, is an antidote to anger. Patients, family, friends, and helpers should all focus on the strengths that remain, on the accomplishments that can still be achieved. This basic rule is a key to dealing with anger.


The sick person may now be feeling much stronger physically or may have had enough time to begin mastering new living skills. Important decisions or new social contacts may be in the picture. What is common is a growing sense of safety based on new competencies. Moods are happier and the difficulties seem a bit further away. The sick person is learning the possibilities and limits of the new competencies. Friends are selected on how well they react to the fact of illness. The family establishes new routines -- or it dissolves. What exactly has been reconstructed? Certainly it is not life like it was before. Instead, it is a reconstruction of the sense of oneself as a cohesive, intact entity. The reconstruction takes on many concrete aspects, such as the development of new skills, but the most important value is emotional. When a customary pattern of living has been shattered by illness, the patient fears that he or she is longer recognizable as a whole being. It is the reemergence of a positive self-image that constitutes reconstruction. Often people do well for a few weeks and then are devastated by some incident. But each experience with trusting and succeeding is a building block for the next step of reconstruction.


\Now that everything is looking brighter, everyone is tempted to relax and may, therefore, be caught off guard when a significant depression recurs. The elation associated with new skills can give way to new feelings of despair as the patient recalls how much simpler it was to do routine things the old, pre-illness way. Nostalgia and grief may combine to produce sadness and discouragement. Many people know exactly when they expect to hit these rough spots. Medical appointments and anniversaries are notable examples. Seeing a doctor, who confirms your intuition that your condition is not improving or is worse, often leads to depression. So may the third anniversary of having to give up the car, the first anniversary of a divorce, the time of the year the physical problems first occurred -- the list is endless. It may be best to seek counseling during these difficult times as a way of shortening their duration and providing new understanding of what all the feelings of loss are attached to. New understanding brings new resilience; it does not make the losses go away. Intermittent depressions seem to combine two feelings. One is the awareness of loss of function that occurs several times a day in the course of ordinary living. But clearly, an amputee does not become depressed each time there is a reminder of the inability to walk normally. There is a second element involved. If the awareness of loss arouses a distinct image of what life would be like if the amputation had not occurred, and if this fantasy has strong emotional meaning for the person, depression is very likely. This image of how you would be without the illness I call the phantom psyche.

The phantom psyche is usually not far from consciousness. It is the self-punishing mechanism whereby the chronically ill person continually erodes his or her own self of self-worth and competence. "If only I didn't have this arthritis [or whatever illness] I could still be mountain-climbing [or whatever activity]." "If only" statements are the bread and butter of the phantom psyche. They contain harsh judgments of worthlessness. In a happier mood, you might experience the same feeling of loss, but say to yourself, "I really miss mountain climbing, but at least I can take a walk today." When the phantom stalks, the soul is uneasy. Doctors and friends often mistake the desperate pain of knowing one's hopeful fantasies will not be realized for self-pity. "Just stop feeling sorry for yourself" so completely misses the point that it is tragic. It is very difficult to have a sense of self when you're depressed and are afraid that you'll never again be of value to yourself and others. Self-esteem increases proportionately to successful experiences of independence and purpose, whether the success is remembering what time to take a certain medication or walking better after months of physical therapy. The phantom psyche -- those unrealistic expectations you have for yourself -- cannot compete with the heady gratification of hard-won success. If family, friends, and medical personnel can appreciate the triumph in being able to struggle, you feel even more triumphant. Well-wishers too often make the mistake of praising a sick person for progress without acknowledging how difficult is the ongoing battle against the inertia of chronic disease. We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.


The losses, and the sadness they cause, never go away entirely. There is a sense of lingering regret for all the capacities that have been lost. A person who has mastered the technique of using a wheelchair can feel very proud of this achievement and know full well that this device is essential for retaining an active life. But the person does not have to like it. It is not necessary to like or to resign yourself to the compromises you need to make to get on with living. It is only necessary to acknowledge that changes in life style and skills have to be made. Acknowledging that your skills are different from your preillness days is not the same as "adjusting" to illness. There is no surrender involved, only growth -- the creation of new options through new means. The creation of renewal comes from the experiences that teach us not to waste the present on fearing the future. The truly handicapped of the world are those who suffer from emotional limitations that make it impossible to use the capacities and controls they possess. If you have a chronic disease, you need not be emotionally handicapped if you continually strive to be able-hearted. Able-heartedness is within the grasp of all of us. I don't think of able-heartedness as a permanent, static state, however. Developing and maintaining this quality is a process that ebbs and flows, depending on how helpless you feel. Even if you feel in the grip of hopelessness, you are behaving in an able-hearted way by any expression of interest in another. Shared interest and compassion is what establishes meaning and purpose in life. When you feel discouraged, you feel all alone -- and there is some truth to this feeling. But in many important ways you are not alone. There are hundreds of people in your city who have similar feelings at times. If disturbing thoughts wake you in the night, know there are other struggling with their pain. No one can share your unique experience, but there is kinship and a strength among all of us who are no longer able-bodied. There are some positive coping skills that are required by unavoidable health changes. These are summarized below.

Make Your Expectations Realistic

The most important aspect of making expectations realistic is the recognition that they are time- limited. "What can I do now on the basis of the way I feel at this moment?" If you have two minutes, what are you going to do? I counsel people to check with themselves to find out what they want to do. Illness can make you feel that you must surrender all goals, all wishes. But that is not necessary. Make your expectations run like this. "Within the limits of my physical ability I will do whatever it is I want to do for as long as I can."

Approach Problems Actively

A second essential skill is an active approach to problems. What is an active approach? It consists of defining the problem and determining the outcome you want. It involves trying to ensure that any energy expended constitutes a step toward the solution. Rarely does it constitute the complete solution. The admission "I cannot do something" is often the first step in solving a problem realistically. Define what you want and then use every ounce of creativity you possess to determine how you are going to make it happen. Creativity is not impaired by illness. When you define the problem you figure out how many facets there are to achieving some kind of resolution, and then you expect yourself to make only that part of the effort that is realistic. What this means is that you need a broader sense of community. There are going to be a number of things you cannot do alone. Your dreams do not have to change. How they are realized will probably change. The creative, flexible use of your energies and creativity to get as much satisfaction as possible is your mission.

Seek Appropriate Help

The next skill to learn is to ask for appropriate help. It is not a moral weakness to ask for assistance, but many can probably recognize the tendency to regard asking for help as shameful. It is a limitation if one does not know how to determine whether or not assistance makes sense. It is a limitation if one is harsh or angry with the helper. Asking for help can become a more and more graceful skill. It is certainly not the first choice for people who would rather do everything themselves, but it should be your choice if you are going to pursue what you need and want -- when you cannot do it alone. If you have a hard time asking for help, consider what you would do if you were fully able-bodied and a friend of yours had your particular problem to solve. What would you do? Do you see yourself denying help as you gear others might deny you? Would you be upset if your friend asked for the specific help that was required? Chances are you would feel fine about helping out if you could. You would just do it. Try to be as kind to yourself as you would be to another when it comes to asking for help.

Handle Your Anger

The next skill involves learning how to become emotionally efficient and energy conscious. Energy is a tremendous problem for those with chronic illness. There is none to waste. Some of the most wasteful expenditures of energy are for resentment and anger. These emotions are not bad in themselves, but they do wear you out. If you are angry, it helps to have some consciousness of what you are angry about, and whether you want to angry about that. Sometimes you will want to be angry because that is the appropriate response. Sometimes you will want to be angry because it is more efficient to be openly angry than to deal with bitterness or other forms of calcified anger. The better you get at being direct about anger early, the more energy you save and the more efficient you are. Surprisingly, many people do not know how to recognize their own irritation or anger. If you are feeling irritated, it might be helpful to be assertive, even if in the short run you feel uncomfortable.


Another skill that is especially restorative for those with illness is to put positive energy back intoworld. You can do this with family, friends, with self-help groups connected with your illness, or with community groups. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. Be a good friend to yourself and don't overlook your finer qualities. If asking for help is a skill you possess, then there is even more constructive energy available to invest in the world around you. Obviously, one of the things illness can do is to constrict your social world. Sometimes, this leads to the perception that there is nothing you can do for others. That is just flat-out wrong. If you have exhausted your own resources in looking for ways to participate, you can call organizations that are concerned with your illness, like the Arthritis Foundation or the National Multiple Sclerosis Society, as well as other national and local self-help and research organizations. They can offer suggestions, and may have specific ways that you can help them. People volunteer because it feels good.


Live In The Present

Another skill, that is a challenge to learn, is to look neither too far backward or too far forward. If you are only looking backward, you are giving up on yourself emotionally. Your losses are major issues, but losses do not get people through one day at a time or one day after another. Losses are not a good reason for living. If you use all your emotional energy considering how things were before the illness and comparing it to how things are now, you are being very self-punishing. If you sense this going on, you need to be extremely aggressive about rejecting this. Illness does not diminish one's humanity. Mobility and physical comfort decrease with illness. Fear and worry increase. But illness does not diminish humanity. Be humane to yourself. Avoid dwelling on how good things were I the past compared to now. Also avoid distant future fantasies. There is no way to know what will happen some years hence. And you know, there never has been a way to know the future. If you are not stuck in the past or tormented by distant future images of what should be, you have the opportunity to manage this day with awareness. Living in the moment with consciousness, patience, compassion, and appreciation for yourself and others lets you get on in a creative way, in spite of the pain of your losses.

Cherish The Good Times

The last skill I would commend to you is to pay attention to the positives. This can only be done if you have already mastered the skill of living fully in the present moment. You go through every twenty-four hours with enough of yourself available to the world that when something positive happens you let it in. There was a rainbow yesterday. There may have been an interesting interaction between you and the grocery clerk, or you had a close, warm exchange with someone you care about. These are the kind of positive moments I mean. These are moments that need to be framed and stored to be used on days that are much harder. If we are in a quagmire of negative emotion, we can turn anything into proof that there are only painful things in the world. This final skill is learning how to hold onto the positives, to cherish them sufficiently that they do not drop out of your repertory of significant life events. Once you notice the positives, how do hold on to them? The best way is to slow down -- to use relaxation, meditation, and your own internal capacity for joy to feel that moment inside. Let it resonate within. This allows your emotional commitment to be fully focused on the process of life. Be as emotionally able-hearted as possible, despite physical limitations.

What all these coping skills have in common is that they are daily necessities. You don't just get them down pat once and then forget about them. You need to use these skills frequently. Every day is going to give you something different to try to manage. You need these well-practiced skills to succeed.
The circumstances you face may at times be miserable. Nothing can alter this reality. Trust that you will learn from each stage and from each cycle through the stages. Learn to trust others enough so that when the situation seems unbearably stressful, outside counseling and psychotherapy can be sought. Renewal cannot always be attained without help. If these ideas have reached you at any level, you have already begun the process of renewal. You are adapting in the face of great difficulties. There is no right way to come through the ravages of unavoidable health changes. But I have tried to show you ways to remain an active agent in your own life. You are not alone. None of us is alone. We may not know each other yet, but there are kindred spirits. A single treasured personal relationship makes the path bearable.

I wish you a safe and thoughtful journey on what is truly a road of hope. I travel it with you. You have a companion and you have hope."

Feb 28th 2014

I received a very lovely email from someone:

"Hi Nat, I hope you don't mind this email. I saw you gave your email address at the bottom of a moving post on your blog - it was about chronic illness and loneliness. I found it by googling "am so lonely rosacea." I began posting on the Rosacea Forum late last summer around Mirvaso's launch and when I became a full-fledged flusher. [..] I won't bore you with the details of my rosacea. But I just wanted to thank you for your post. I nodded my head throughout. Some parts were so true that I couldn't finish reading them. I really appreciate all of your efforts on the blog and the forum. It's because of you that I knew to ask (and explain to my derm) about clonidine and propanolol. It's helped. Still suffering a lot. Today was not a good day with drs and flushing and my mood - but your blog post said it all. I'm sure others have reached out and told you how nice you are for all of your help. I wanted to do the same. I'm grateful for your wisdom and the strength and compassion in your writing. All best wishes, X"

Thank you so much H.G.! I don't hear it often, apart from my few rosacea friends, so I really appreciate your kind words. You usually write for a big black void that doesn't reply, it's only in the viewer numbers that I can see someone actually reads it. I am sorry you are also struggling and suffering. It's a shame but you will probably get most understanding and support, in the end, from fellow sufferers. Or perhaps you are blessed with extraordinary friends and family :) I am glad the meds are helping at least a little bit. This is an ongojng, chronic disease for most, with lots of ups and downs and relapses. Feel free to email me if you feel like a listening ear. Thanks, N.

On The Rosacea Forum, a member 
called Broken wrote a very powerful comment on dealing with rosacea:

Rosacea hit me in college. I quit and got a job at night that kept the social interaction to a minimal. I went through hell for the last 10 years with severe depression/anxiety/anger. Along the way my crappy job at night led me to meeting a variety of people some of which has had a lasting impact on me. I eventually got tired of feeling sorry for myself and started looking into the best ways to deal with my skin problems. For me a super strict diet with supplements has improved my skin and mental health. Rosacea as bad as it's been for me has built me into a much stronger person with a better perspective on the world. It's opened my eye's to what's actually important in this world and in the next. I feel my journey with rosacea is a necessary hurtle to become the person I am supposed to be. It's funny looking back and thinking how much different my life would have been without rosacea. I would have been happier, but the people that are the most important in my life wouldn't be. I am forever grateful for rosacea for saving me.

March 28th, 2014

Caroline Flax gives excellent advice in a column in the Washington Post, and this week she gave a very good advice on longing for different things in life and acceptance of the status quo. Also some interesting reader comments below the article:

Carolyn Hax: Two kinds of longing — for love or a child — have similar paths to resolution

Dear Carolyn:
I get you are a strong believer of the be-content-with-yourself theory of singlehood. What I am not getting is when someone is longing for a baby, we “get” this and understand if they skip other people’s baby showers, etc. We can understand their pain. When someone is single and longing for a partner, we assume something is wrong with them for craving something outside themselves. Your advice has really followed these lines and I don’t see the longing as all that different. Please explain.

Thank you for the opportunity to. Before I do, though, I’ll note that I don’t “assume something is wrong with” anyone who has such a fundamental longing; suggesting I do misrepresents my long-standing position on this. Which is indeed to seek contentment with oneself — not because only defective people do otherwise, but instead because doing otherwise is flat-out self-defeating. What else is there but self-contentment? To curse your bad luck (or good taste)? To blame past partners for not being marriage-worthy, or not regarding you as such? No life goes exactly as planned, and so our happiness with the one we have will depend largely on how productively we respond when it takes an unwanted turn. Infertility is indeed a similar, unwanted turn, but with significant differences. For one thing, you can know you’re infertile; you can’t know you’ll remain single in perpetuity. Plus, infertility is a physical condition for which there are treatments, and, when those fail, alternatives; the alternatives are imperfect, yes, and often prohibitively expensive or challenging, but they’re part of a defined set of choices, typically made within a defined period of time. By contrast, an adult who wants to be someone’s spouse cannot turn to medical intervention, surrogacy, fostering or adoption. Instead, that adult controls only him- or herself. Thus the long-range, make-the-best-of-what-you-have advice to someone single vs. the short-range, manage-your-emotions-as-you-make-your-choices advice to someone facing infertility. Both of these situations have the power to derail someone emotionally for a time; in that, they are terribly alike.

The main difference here — and the gap in which your distress has found purchase — may just be that infertility allows for a logical grieving point, which people like me can then account for in advice and expressions of concern and sympathy for dodged baby showers. There is no such Moment, no last round of IVF, on which a lonely person can hang his or her grief. Indeed, the undefined window of time can aggravate the pain of pining for a mate. So that is where I’d amend my advice: Pick a point, and grieve. Grieve what you hoped or planned for that hasn’t materialized — maybe when you first form the thought, “I thought I’d be married by now.” That goes for someone pining for a mate, but also for someone longing for a child, left adrift by an indifferent nuclear family, immobilized by thwarted ambitions. Dodge that baby shower OR wedding OR reunion. But keep letting grief make your decisions? No. I wouldn’t be so understanding of baby-shower avoidance ever after in response to infertility. Eventually, all advice flows here: Do the hard work to be content with yourself. Maybe you’ll like it better as a tenet of Buddhism: Learn to want what you have. It’s not theory; it’s peace.

June 12th, 2014

This is an interesting vimeo short video on loneliness, especially as a result of modern life and social media:http://themindunleashed.org/2014/05/heres-facebook-brain-kind-shocking.html

April 21st, 2015

I read this Guardian article: "How to embrace loneliness? A modern guide." Excerpts from the article:

"Loneliness can creep through your bones like a disease, wash over you unexpectedly as if a stranger’s vomit, or sit in the pit of your stomach for weeks like undigested chewing gum. Especially, it turns out, if you’re young. A survey carried out by Opinium for The Big Lunch has found that 83% of 18- to 34-year-olds have experienced the dull, quiet ache of being lonely, which is no surprise to me. Of course it’s easy to be lonely in your 20s. You may sit in an office of 50 people, but if you email your colleagues rather than exchange gossip over tea in the communal kitchen then it’s hard to feel truly part of a group. When you eat lunch sitting at your desk, idly scanning through other people’s Facebook photos rather than chatting around a table about the canteen’s latest attempt at tex mex, you leave yourself open to the cold draught of loneliness. If you sit on a sofa with your flatmate silently scrolling through everybody tweeting about a party you didn’t go to, you may well start to feel socially estranged. Is it so surprising that 28% of people under 35 wish they had more friends?

Our constant state of remote social interaction is a twin spear of loneliness; we are both aware of all the people out there having more fun than us, while being slipshod about making our own plans. Organising drinks with friends is often little more than a rolling set of text-based delays. Are you free on Tuesday? Maybe – I’ll let you know on Monday. Do you want to do something this evening? Perhaps – let me see if I can get out of this work thing. Are you on your way? Sorry – I’ve just been held up in a meeting, but perhaps we could meet later instead? There is something altogether lonelier about hanging suspended in social limbo than facing a blank diary. Because many people under 35 have failed to learn the noble art of being alone. Just as those four-hour car journeys to visit your granny with nothing but three rubber bands, a pencil and the swaying nausea of travel sickness used to teach us how to deal with boredom, our pre-mobile phone lives once taught us how to deal with loneliness.

I remember walking through Leeds during my first week of university utterly alone, lost, looking for Argos. It was a petri dish of potential loneliness and yet, rather than reaching for Google maps, I went into a baker to ask for directions. I ended up spending the next few minutes talking to a woman with a face the consistency of a floured bap about electric blankets. It was wonderful. And, although only 10 years ago, it now sounds like something from a Thomas Hardy novel, especially to a modern 21-year-old with a smartphone embedded in their fist. The problem, of course, isn’t being alone, but in how we think about being alone. We fear it, pity it, do anything in our power to avoid it. And yet, in the modern frenzy of social media, smartphones and overpopulated cities, loneliness can be a luxury. Isolation, silence, the longing to be among people and forced self-reflection are all incredibly useful, especially if you want to achieve something creative. Being on your own is how you learn to value company. Silence is what gives value to conversation. Having nobody to ask is how you work out what you really want. It may not always feel like it, but loneliness can be incredibly productive. Being on your own is a knack, one that takes practice, and not learning it may actually be fatal: research published by Brigham Young University last month showed that loneliness can increase risk of premature death by up to 30%. So you must be prepared to talk to strangers and make plans that don’t rely on others. Not just because your friends are a fickle bunch of thumb-active flakes but because doing so directly affects your chances of living to see the wrinkled side of 60. And you are alone. Whatever your Facebook feed says. As Orson Welles, that cleft-chinned citizen of the lonely world, once said: “We’re born alone, we live alone, we die alone. Only through our love and friendship can we create the illusion for the moment that we’re not alone.”

You can fight loneliness, learn to love isolation, make use of the discomfort of time on your own and come to realise that sometimes the best tunes come in solos. And as you eat your sandwich in a deserted park or sit at home listening to the drip of a tap, remember this: you’re not alone in feeling lonely."

September 19th, 2016

I read an interesting article:

To Those Comparing Themselves to Healthy Friends After Their Chronic Illness Diagnosis

"There is one thing in common between becoming diagnosed with a chronic illness and losing a loved one: the seven stages of grief, known as shock, denial, bargaining, guilt, anger, depression and finally acceptance. These seven emotions are also often felt by people experiencing the day-to-day struggles of living with a chronic illness, as well as the recently diagnosed. But there is one stage not listed in this less-than-stellar lineup: comparison. The rude awakening of a diagnosis, and feeling like your life was stolen from you after one life-changing doctor’s appointment may come with weeks and months of comparing yourself to others without this chronic illness. Learning to accept the illness is only half of the battle. The other half is living with the physiological symptoms of them. They are both equally painful.

Having to stay behind while friends go out to eat or having to turn down a delicious cookie because it has too much chocolate in it, which would provoke a migraine, constantly reminds me that my life is not like my peers. Over the past two years of struggling with chronic illness, I have experienced every one of the seven stages of grief. None of them are easier than others to handle and they get progressively harder each time a new emotion appears. However, by far comparison is the one that is the hardest for me to cope with each day. Comparing myself to friends who can run a 5K or get straight A’s and graduate cum laude is stress-inducing on its own, let alone trying to achieve these feats when living with a chronic illness. Every day, my life has been scaled down to a microscopic level. Everything from making sure I go to bed before 10 p.m. and hoping I am strong enough to get from a prone to a supine position without syncope, or even little things like walking up three flights of steps to get to my classes on the third floor.

I think comparing yourself to your other healthy peers is disrespectful and degrading to yourself. Your first priority is becoming as healthy and strong as possible during the day, and the rest falls into place. Teacher yells at you for being late? Be happy you were able to come to school today! Friend gets annoyed for canceling plans? Remember that she hasn’t walked a mile in your shoes. I hope if you take nothing else from this article, it is to be kind to yourself. It is not easy accepting and coping with a chronic illness, yet it becomes your lifestyle very quickly. Each time you start to compare yourself to others without chronic illnesses, whatever they may be, remember that the hand of cards you are dealt means that you are strong enough to handle them and, I believe, still succeed."

May 16th, 2017

I read some more interesting blog entries on living with chronic illness:




This is also a wonderful blog by a woman who has: "Severe Multiple Chemical Sensitivity, Chronic Fatigue Syndrome and Electro Hyper Sensitivity coupled with the emotional and psychological impact of living confined to one bare room for several years with minimal human contact, changed me forever." http://www.ameliahill.com/3-game-changing-lessons-i-learned-while-confined-to-one-room-for-five-years/

September 14th 2018

I have had quite a bit of time the past weeks to listen to audio books and watch things I wanted to see, as all out exhausted and in emotional zombie state from the full body skin infections and itching plus the mourning of my cat. I saw a long interview with a very inspiring woman called Esther Perel. She is a Polish/Belgian psychotherapist or psychiatrist I think, and she works often with couples who have relationship problems. She told very lively and interestingly about this. Some parts that stuck with me, were here analysis of what happened to her parents, who both survived concentration camps during the second world war, and met each other on the street, right after liberation. She said that the camp survivors she knew, could be divided into two groups, roughly: those who really wanted to live intensely afterwards, and those who were alive, but were only surviving afterwards. This second group had all their joy of life beaten out of them. She made a bridge to the theme of ' happiness'; something every one of her clients was looking for. And she thinks that happiness is the effect of something else; a feeling of meaning. Camp survivors who managed to find meaning in life afterwards, tended to feel also happy. Sometimes they even found meaning in their own suffering, by writing down their experiences, by documenting history, or by educating others. Or by having families and making sure their Jewishness was continuing, despite it all. Having a goal in life brings happiness, Esther Perel thinks. Those who drift aimlessly without a personal goal, tend to be less happy. It might sound cheesy, but that is more or less why I started with this blog, back in 2005 or 2006 it was. It felt so powerless and useless to suffer daily with this burning pain, and it felt like nothing positive came out of it. Just destruction. Destruction of my personality, my life dreams, my friendships and relationships. And by documenting it, there was at least some tiny meaning to it all. Perhaps others in the same boat would read it and feel less alone. Or could do with tips or experiences I went through. I have written diaries since the age of 8 and always have had a strong desire to document things and make them feel definitive by describing them. But the pay off is that I feel happier for doing so, because it gives me a sense of meaning. It's not a huge importance to the rest of the world probably, but it makes me feel good to extord and wring at least something positive out of this whole sappy sorry saga.

Of course, hearing Esther Perel make such a distinction between the proactive go getters and the melancholic reserved camp survivors, it also felt a bit short sighted to narrow it down to attitude. Some people have an extrovert personality type and get energy from being around others and going out, others are introverts who might have a lot more trouble overcoming such immense trauma. When our middle sister died in 2004, my youngest sister had a much more proactive approach too, forcing herself not to hang onto that trauma and going out a lot. I am the opposite of her and more of an introvert and I was sucked in deep by the sadness and loss. I don't think either of us made a conscious choice to do one of the other, but instead did what comes natural to us. Maybe the second group of camp survivors Perel described, had much worse PTSD. perhaps their unique experiences were different, or the contact of their outcome was worse. Perhaps their personality types didn't allow them to take a lot of people into confidence and they didn't talk much about what they went through, instead bottling it up (whereas talkers tend to work through trauma more by opening up and talking about it, especially when their trustees are sincerely interested and sympathetic). And thinking about the horrors these people went through, isn't it bound to haunt your mind until you die? And with regards to happiness being subjective; it also necessitates a certain measure of self-deception. If you are unable to suspend thoughts of events and consequences that are anything but desirable, then happiness is but a transient moment, if at all attainable. My friend wrote: "I do not drift around aimlessly without a goal .. or without goals. Nonetheless, the fact that I perceive life—inclusive of all of Nature—as utterly without purpose, I find myself evermore indifferent to all things and action or impetus for action. (I can almost hear the character from the Clint Eastwood movie, ‘IN THE LINE OF FIRE’, telling me the same thing he told the soldier:  ‘I think you need to get laid.’)"

Esther Perel also said that humans distinguish themselves from animals with regards to sex, thanks to imagination. Humans have an erotic imagination and can give meaning to our sexual encounters. And the erotic mind makes a person feel alive, energetic and is an antidote against the looming shadow of death (I guess this is a very subjective analysis, as there are plenty of people out there who start—and end—each day with the reminder that ‘all is for naught’. Those for whom nothing distracts from that reality). And some people think that sex is simply sex, and that to imply that humans have an intrinsic ability to transform sex into something other than two organisms making noises that would scare small animals and children, is silly. And that feelings concerning sex, the utility of sex for ulterior motives (sex as a weapon, etc.), is separate from the primal motive of sex—to ‘get your rocks off’. Besides, animals can have some very time consuming and eloquent mating rituals. Many bird types are monogamous, something we cannot say of humans, or mammals in general. Animals go by instinct and do what is good for the species; again, something we cannot exactly say of humans.

Esther Perel said that humans erotic imagination can also be the source of personal problems for humans; most of us want to feel something, instead of just do something; perform. And so many people have interpersonal problems; with loved ones, with family members.. :(  But relationships are a story, and every player in it has his or her own version of the story. In a good relationship, these versions of the story can overlap, or live together without clashing at the least. But when these versions are in complete conflict, and seem entirely different stories, there is trouble. Then people feel powerless, isolated and misunderstood, and this can do long term damage. A therapist can help deal with such obstructions of people get stuck in the past and cannot move forward (although for others, affecting vengeance upon would-be-oppressors-and-tyrants, including total disregard for norms of morality as well as law also seems to work wonders to avert despondency and depression. Jokes.. sort of). And therapy, like AAA-membership or rehab, can only work for those who want to change.. Those who actually have some remorse, or introspection hidden inside them already. I read that therapy rarely to never works for narcissist or psychopaths for instance (VERY different group!), because they can morph themselves into very compliant seeming patients, all the while observing the therapist and refining their manipulation techniques further. making them more dangerous.

Esther says that it is not ideal to feel like a victim the rest of your life, and to let the past drag the now and the future down. Perel gave the example of the recent movie about ice skater Tonya Harding, where an ambitious mother gives very tough love to her daughter, in order to succeed. And in adult life, the daughter has a lot of problems with the past and her mothers upbringing. But both have a different version of the story and have their own arguments. The mother is played brilliantly by Allison Janney, and she really does have a story behind her choices; how her own mother never invested in her, and how she gave all her time, energy and money to her daughter in order to succeed. We'd call her a Tiger Mom these days probably.

A story has many characteristics, is the moral of the story; it is an illusion, as well as a truth, and a perversion, as well as an idealization. In this movie, the mother and daughter are both stuck in their version of the story. They want to build up a relationship together, but they need something or someone to make a bridge, enabling them to step over to the other side to see and feel the other persons versions of events. Both stories need to be validated for the parts of truth both stories often have. And both parties tend to be sure about their own version of events, and that type of certainty is an enemy of change. Once you have first validated their segments of truth, a therapist then usually starts to confuse them both about their version of events. Challenging them to step onto the bridge and investigate the other side. You have to give up your certainty if you want to change and come to new insights. And this sounds more rational and easy than it really is in life for most people hahaha :D And a relationship with someone else is not just about what each of them is within themselves, but also about what is between them two; what connects them and what is created when these two people come together. Because the behaviour of the one, will influence the other, and vice versa. (And when you look at families and their interactions, it gets even more complex!) We are not static, we are always transforming as humans and that is also why we aren't always behaving in the same way in different relationships. Many 'environmental' factors are influencing our own behaviour.
Some compare therapy to playing billiards; when you want a ball to go in that specific pocket, then it is not enough to just play that one ball straight into the pocket. No, you need to think about what other ball to touch first, which sets a chain reaction into motion, eventually letting your ball end in the pocket, but moving all the other balls that are players in this game. Therapist, but also people in general, need to think strategically sometimes when they want to set others in motion. And we all play roles and sub-roles within our relationships; either with loved ones, kids, friends, family members and so on. And if you imagine them to be billiard balls, then you need to realize that if you move one ball, it will impact all the other balls too. (Or….one can avert disappointment by recalling how unpredictable and selfish and lazy and other ways individuals can be, forget billiard balls, and focus on creating something oneself, even if not expansive. At least in that manner disappointment is easily acceptable. Caring less has brought me a ton of peace of mind, strangely enough).

And then there are also those stories which make up our relationships and our lives, which should sometimes be left untouched, because people rely on them to deal with life. And even relationships themselves are stories, which have truths to them, secrets and a lot of silence and space between truths and realities, which leave space for illusions. Think of the man who has an affair while being married, and all the illusions he feeds in particular to the other woman. And all the illusions she chooses to belief in to fill up the many voids. The meaning of romanticism is to tell a beautiful story; a roman as we call it; a novel. One in which you, by defaultplay a very important part. So for some people, stories are very important to live by. To find purpose and meaning in; people live with these illusions in order to give meaning to their lives. Sometimes the role of husband is not the only role these men play, and sometimes they aren't always present as a father either. With some people, what you see is what you get. And with others you need to talk to 7 different people from their inner circle, to figure out all the pieces together and get a picture of this elusive person, because everyone of them knows another part of this person.

 Update October 9th 2018

Some Nietzsche quotes:

“The Thought of Death. 

It gives me a melancholy happiness to live in the midst of this confusion of streets, of necessities, of voices: how much enjoyment, impatience and desire, how much thirsty life and drunkenness of life comes to light here every moment! And yet it will soon be so still for all these shouting, lively, life- loving people! How everyone's shadow, his gloomy traveling companion stands behind him! It is always as in the last moment before the departure of an emigrant- ship: people have more than ever to say to one another, the hour presses, the ocean with its lonely silence waits impatiently behind all the noise-so greedy, so certain of its prey! And all, all, suppose that the past has been nothing, or a small matter, that the near future is everything: hence this haste, this crying, this self-deafening and self-overreaching! Everyone wants to be foremost in this future-and yet death and the stillness of death are the only things certain and common to all in this future! How strange that this sole thing that is certain and common to all, exercises almost no influence on men, and that they are the furthest from regarding themselves as the brotherhood of death! It makes me happy to see that men do not want to think at all of the idea of death! I would fain do something to make the idea of life to us to be more than friends in the sense of that sublime possibility. And so we will believe in our even a hundred times more worthy of their attention.”

“The most common sort of lie is that by which a man deceives himself: the deception of others is a relatively rare offense.”

“It is not a lack of love, but a lack of friendship that makes unhappy marriages.” 

“I'm not upset that you lied to me, I'm upset that from now on I can't believe you.” 

“And those who were seen dancing were thought to be insane by those who could not hear the music.”

“Whoever fights monsters should see to it that in the process he does not become a monster. And if you gaze long enough into an abyss, the abyss will gaze back into you.”

“The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself.” 

“He who has a why to live for can bear almost any how.”

“The surest way to corrupt a youth is to instruct him to hold in higher esteem those who think alike than those who think differently.”

“Every deep thinker is more afraid of being understood than of being misunderstood.” 

October 11th 2018

I've been flushing and burning for the past 10 days or so. I have no idea what triggered it... Shouldn't yet be hormonal/cycle flushing.. I have eaten fairly clean, as in; no fast-food, sugar, gluten, dairy.. Maybe the warm-ish weather and high humidity caused it. Or maybe it is just one of those random rosacea flare-ups. It's hard doing my normal rounds when my skin is so painful and feels burned up and hot. I don't even look deep red, more pink, but my cheeks feel really sore. Wished I never had that stupid IPL treatment back in 2005..  I'll add some photos of it below. In one my lip is swollen because my cat was overly enthusiastic about a toy mouse game and slashed my lip with his nail haha. As usual I try to just show a close up of one cheek (I find my photos back on all sorts of rosacea related sales and business pages nowadays, never with permission so I try to make them as useless as possible for such purposes), and I use no filters or whatever, and don't have a smartphone so they are made with a regular camera. I have been feeling a bit low the past weeks. Mostly because my sore face just keeps me in lock-down, and interferes with some social things I wanted to do, and also because I worry sometimes that this is going to be my reality until the end of my days. It's been nearly 20 years since I developed this and so far practically no new treatments have come on the scene, and nothing that has helped me. I spoke with someone who is in the same boat rosacea wise and also has other auto-immune diseases, like myself. Also tied to the house a good deal of time, when illnesses flare, and also for many years already. We share good and bad days and similar struggles mostly. We discussed how to mentally deal with it all, especially during bad spells. When our skin is calm, we are OK with it all and go out, meet with other people,, travel etc. But the bad periods with severe flare ups and staying in the house so much, makes us struggle. Also the lack of perspective, the lack of respite and control. Of ways to just forget about it all and go out and enjoy ourselves when we're doing poorly, like most other people out there. Instead we need to live in controlled spaces, avoiding warm temperatures, sun, bright lights. It is severely limiting, and the worst aspect I find is that even while doing all that, or not doing so much in fact, I still sit here with a burning red face.

Despite not being the social butterfly by nature, I still find it all claustrophobic and limiting. This friend encounters the same things and at the moment struggles to find comfort in life. And to suppress dark thoughts at times. You need to dig so deep within yourself when you are housebound in order to find ways to push the darkness away. And still it can wash over you unexpectedly and suddenly, this wave of negativity that can be so strong that it kills your thoughts, heart, etc. The more negative it makes you, the deeper you spiral downwards. Some call it the black dog concept. In our case, the lack of control we have and the severe limitations in life are probably causing it. And the pain and discomfort. These things we suffer from make so many demands on our every day life. Going out to dinner or dance with friends is often no option when your face feels and looks on fire.. Usually I end up sitting with cold packs at friends houses, or in a restaurant during such spells. I still go out regularly, but it all depends on how bad my flushing and burning is, and appointments can be altered at the last minute sometimes. Friends invited me to come to a theater play I particularly look forward to and have a bite to eat afterwards; we did the same thing last year and I was beet beet red and on fire all through the performance (luckily it was dark) and during the dinner. I tried to just ignore it, the others know about my skin and health issues... It was mostly a lovely experience in retrospect, when I was back at home, cooling my skin and collecting memories. Outings in general are limited in a lot of ways.

We both sometimes think about the why question. Not just 'why me', but also what is the meaning of suffering in general? Is there even any meaning to it? And how to deal emotionally with a situation you cannot change, but are unhappy with? A situation that has become pretty hopeless in some respects (hopeless especially with regards to outlook on new better treatment options). I keep looking and reading about new rosacea developments here, but I honestly don't expect anything groundbreaking to occur in the next ten to fifteen years... Not trying to burst anyone's bubble, but this flushing and burning thing is a lousy condition to suffer from and a complex one to treat.. It takes a lot of energy every day to be positive and energetic and keep hopeful and trustful in the big scheme of things. I like to get lost in things; writing, reading, exploring. Vee are zhe lucky onesz weeth zhe internet running as iet ies. To speak in Allo Allo language. I'm counting myself lucky to live in the internet age; having information, movies, tv-series, documentaries, college classes and penpals at the tip of our hands. But I can't sit behind the computer screen all day either, as that makes me flushed too.

Spirituality is one of the last things (or for some people the first thing) to go when one feels hopeless, and badly treated by the universe. I'm not sure I have ever been very spiritual, my friend was, but consistent beatings down make it easy to lose your spiritual sense. After all; why would the universe be out to make you suffer? While others around us seem to sail through life? (With emphasis on 'seem to'). Suffering can make everything seem harsh, and cold. Some even say that it makes them feel like life is laughing at them. With so much adversity it is hard to be religious or even spiritual. My mum is quite spiritual and I asked her often, in despair; what did I do to deserve all this bad "karma"?? Was I some monster in another life? Why this relentless constant stream of troubles, illnesses, hassle. Then the dental issues again, then the cat dies, then more health issues... She doesn't know the answer to that she says, whether or not there is any meaning to suffering. There might be, or there might not be. She thinks that all adversity has an upside, brings us something good as well, or pushes us in a direction where we are confronted hardest with our own 'learning points' in life. In my case, I would need to learn to let go of control. And let go of vanity regarding physical looks. I just like to think that there is some sort of purpose to it all, even when I know it most likely is a little trick of the mind; wishful thinking that is not that different from religion. But it helps me to see it as a challenge from the cosmos or something; and to imagine some sort of enlightenment as the eventual reward, at the end of the line. Despite looking for facts in every day life, I do believe there could be more than just atheistic version of things. Not a traditional God. I'm more wondering why this highly unlikely chance at life (if you go by the mathematical calculations in favour of your own birth, the odds are staggeringly against the whole thing... yet it happened) could not happen twice. It makes no sense to me to assume that if something could happen once, it could not happen twice. I don't mean that we can be born again in the way and shape we are now. But I'm only referring to the spark of consciousness. I mean, my cats have consciousness too. They might not be aware of this, but they exist, they experience emotions and pleasure and pain. They live. That thing in us that is like the light and the awareness; I don't think it is 100% tied to our specific DNA. I don't see why we couldn't be something, somewhere and some time, again.  In all honesty, I also find the thought of never being or experiencing anything after death too frightening.. I can't even imagine it, eternal nothingness. It's freaking me out. Anyway..

I know that suffering is easier to bear when you find a purpose for it. I wrote about this psychiatrist Esther Perel earlier in this post, and she also touched on those topics. Finding meaning in life and in adversity, in order to move on. So with regards to our current suffering... perhaps we are tested in some ways and we have to show our strength through this very difficult moment in time and in this life we now lead... Again, I realize this is akin to religious, mythical thinking. But we didn't do anything to deserve this, so why are we dealing with this for so many years now? I somehow feel we need to find the strength to carry it all and develop as human beings, improve in whatever ways we can, and that perhaps there is something after this life which we aren't aware of yet.. That thought gives me strength. The possibilities out there and just the feeling that we need to be strong now, to perhaps get the 'rewards' of it later on. Which funny enough is a deeply Christian (or religious in general) concept haha. But maybe that is what age and adversity does to me; finding more understanding for other peoples beliefs and motivations and coping mechanisms. It can also be hard to stay warm and understanding and not cynical and hardened when life is so rough and you see others have it so much easier. And when you suffer without hope or respite year after year after year. All of that pain adds up.

I find a lot of comfort and solace in friendships, my cats, books, stories and art. Travels too. Information, staying in wonder of new things you learn. Being creative in one way or another can also be a great coping tool. When you create something and get in that zone - may it be writing, painting, composing, whatever, a creative thing -  then sometimes time falls away and you are in a cloud, away from every day stuff. It is escapism and it feels useful because you have something created at the end of the line. Nietzsche said that in the end, only music transported his mind away from the ever grinding mechanisms of the brain. (He ended up in an asylum with a mental breakdown in the end). I also get strength from knowing I have battled through this physical pain for almost two decades now, and I feel proud of myself for this. I'm not someone who is critical of myself in the traditional sense; 'Oh you're too fat, too ugly, too boring, too different'. Maybe it is due to my upbringing.. My dad is an artist and eccentric, my mum is an einzelgänger too and very glamorous but not afraid to be different and to stick out from the crowd. We learned early on that conventions are strong in most people and people who are different catch a lot of wind in a storm. I don't suffer under being different now either, therefore. Different as in; less of a social butterfly than my friends, less uncomplicated with my health limitations, less living by the current norm of those around me, which is a very busy professional and social life, juggling with 8 balls in the air, having the latest gadgets, being both partner, mother and good social friend. I'm probably less optimistic than most are. But things are as they are. We are who we are partly by nurture, but also partly by nature and there will always be people out there who appreciate you for just that; your own individuality. Nobody will be liked by everyone else out there. You shouldn't strive to be loved by everyone either. So for everyone dealing with this shitty condition and with feelings of self worth and such; try to be proud of yourself, for battling through all this, and finding the will to look for solutions and improvements. Be proud for the ways in which you keep going, look for new and better treatments of your skin issues and for keeping to find the positives in life. And try to just take things one day at a time. Maybe set yourself small challenges instead of throwing all problems on one pile and expecting to solve them all at once. It can be easier to just oversee what you need to do or can do during the next day(s).  And try helping others, as that is the fastest way to feel gratification.

I have these bursts of energy, I need to force it, but then I can write and have meetings and do a ton of stuff in a few days, like some hurricane, and then they are always followed eventually by several days at least of mental exhaustion, apathy and a low(er) mood... Just getting up and looking after the cats can feel too much then...  I tend to just binge watch TV series or documentaries or listen to music and read on such days 😞 I think half of my exhaustion stems from my own racing mind and thoughts. I saw another beautiful little program the other day about Japan. Over there, people are said to live for society. Not for their own happiness in the first place, but for the well-being of the country. So the effect of this attitude is that a lot of people can feel bowed down once they no longer feel that they can contribute to society. Think of illness, but also old age for instance, or when being made redudant at work. That can be very hard to bear for Japanese I learned, as they are so focused on finding self worth in meaningful jobs. Japanese also apparently love the ephemeral and fleeting nature of the Japanese cherry-tree blossom. Japan has a word, 'mono no aware', which means something like things of fleeting beauty; watching something that is beautiful, but which you know will decay. A cherry blossom in full bloom is beautiful, but Japanese also find it beautiful when the blossom leaves are starting to fall. A bit like our own poppy flowers, which only last a short while and who drop their petals the moment you try to pick the flower to take her home. And the fact these cherry-tree blossoms only last for a short while, makes them extra beautiful in melancholy-filled Japan. Sadness and change go hand in hand. Strangely enough, peoples own ageing and weathering down is not seen as equally beautiful.

Japanese culture more or less dictates that people should keep their sadness to themselves. You don't talk about your own losses, adversities and sadness in life, because you don't want to burden another person with your own struggles. (Which could just be making the inner problems bigger for people). We all need ways to express our emotions and grief. In the program, they took the viewer to a special phone boot, placed by someone in his back garden, at the foot of some mountain, where people can call with their loved ones. He called it 'the telephone of the wind'. The old fashioned telephone is not attached to anything, you can see the wires being unplugged, but people can express their grief to loved ones who died, by pretending to call with them. Some of those calls were recorded and could be heard in the program. One went like this:

-If you are out there somewhere, then please listen to me.
-I miss you so very bad
-Sometimes I don't know what I am still living for
-I have built a new house
-But without you, it means nothing to me
-I want to hear your voices, but I can't

-I don't know where to start

-It feels as if you are still alive somewhere
-There were so many things I still wanted to do with you
-Are you there, Hiroaki?
-It is such a shame
-I don't know what to say
-Every time a car passes by I think:
-Is that you? Are you finally home?
-It just does not get through to me

The owner, an eccentric older man, placed the phone boot there to help introverted Japanese with their mourning process. Some 30.000 people already traveled to his garden to make a call like this. This man believes that humans have a soul, or a spirit, and that it lives on when someone dies. He believes that a soul is flowing out of the connection between living and deceased humans. That the soul of the deceases makes a connection between those left behind on earth. And the wind telephone helps to establish this connection. He also understands that the people using his phone aren't really talking to the deceased, but more with their own memories.  Japan also have a saying 'ichi-go ichi-e', referring to how you have to treasure every encounter you have with anyone, because it may never recur again. You may not see this person another time. It means a once in a lifetime meeting. And when Japanese have a party, there is always an official end to it. I love that.

I also talked about suicide with this friend. Not something either of us contemplates by the way, not at all. But it seems to happen more often in society, and over seeming (but we never know the true circumstances) futile things like a fight with a loved one or a relative, or the loss of a job. For those suffering physically or mentally, suicide can perhaps be a comforting thought sometimes; there is always an exit door, in case the suffering we endure gets too much to bear... I think most people don't want to die, but they want another life, a better one, and to get control back over their suffering. Its a painful thing. I said to my friend that something as dark and eerie as suicide should never be allowed to take away you. And all that is lovely and kind and smart and beautiful about you. To not allow such a dark cloud to make you think any other way. And to also realize that such an act burdens a lot of people likely with the trauma of such a loss. The what if feelings, the guilt, the self doubt and grieving. Sometimes I wonder if we can better handle and deal with these mental and physical hardships by changing our expectations? I can get really down myself from living inside the house so much and being so awkward socially that I don't want to connect with anyone else but a handful of trusted people.. But then I try to look at the things that do are there; friends, family, pets, a lot of interests, work. Finding purpose in the entire mess can help to make it feel less of a senseless daily pain enduring exercise. And there are of course also antidepressants. I can't stress enough how important and helpful they can be in reducing depression and anxiety, for those unable to control them in another way. I take a relative low dose of mirtzapine (Remeron), first and foremost to help battle the facial flushing, but it also helps me to not go down that rabbit hole too deep anymore... It takes the deepest depths of low moods out, I feel. I remember before taking it, I would sometimes feel dragged into that sort of very intense, bottomless depression, and it zaps all your energy and willpower.

Nowadays, there is always still melancholia and I'm not a bouncing ball of optimism and happiness suddenly, but the extremes seem to have been taken off. It is a calming thing. It also gives me amazing deep, wonderful sleep. I think it is a chemical thing in the brain that causes it all, spurred on by things we endure in every day life. For instance; having no control over red painful skin, over other health conditions, and feeling just like a ship on a stormy sea. Every day it is up to chance or good or bad luck whether or not it will be a good or a bad day, pain wise, rosacea wise. This instability is hard to handle for most. When I started mirtazapine, I had pushed it off for years, too afraid of making things worse; of dealing with the disappointment of yet another failed trial perhaps. Fear of making things even worse rosacea wise, which I feared could potentially push me over the edge. Afraid of side effects too (which it has). But when an antidepressant does work, it can clear things up and make you think straight again; like you used to think. Just correcting a chemical imbalance in the brain and (in my experience with mirtazapine) not changing your personality. Just lifting the clouds.

Update November 27th 2018

A friend told me about trying to find a good psychiatrist, to discuss the psychological aspects of rosacea with. I have seen a couple of psychiatrists and psychologists during my 20's. I think mainly because back then, it was the dermatology department of the hospital that forced young dermatology patients to see a psych. for at least 10 sessions, in a bid to reduce suicide/depression levels in this group of patients. It seemed important to me to go, also because I was very restless back then and suffered deeply from the anxiety and isolation that my rosacea gave me. Nowadays I have accepted things much more and found a balance for myself that I am more happy with. I don't know if that counselling helped with that, in retrospect. I feel it didn't but you never know. It can be hard to find a good fit when it comes to counselors: I have seen four different ones in the past and only one connected with me really. Or connected to my issues I mean. The rest didn't seem to 'get' the problems I have due to my rosacea, burning and flushing, and didn't really help me in the way I wanted to be helped; with suggestions for practical changes. I don't want to do psychoanalysis for four months and talk about my youth for 60 euro an hour. My issues don't stem from my youth, they stem from rosacea and having a burning red face since age 19.. Nevertheless I did end up talking once a week, for six whole months, about my past and had a psychoanalyst dig into it, trying to find patterns and explanations. I don't think there is anything there, other than a happy, free childhood and a difficult adolescence. Maybe some things that happened back then made me more prone to despair once my rosacea started. But for me, unraveling those threads didn't help me practically with the hardships of an isolated life and daily pain. I wanted help with that.

I didn't feel smarter than these psychologists or anything, but I did feel at some point that there was some obvious transparency regarding what text books and protocols they were following. I did not like answering the most personal questions, from a time that felt like another life almost, but whenever I asked them an opinion on something current and pressing and literally asked; what do you think? They refused to answer! They don't want to throw in their subjective opinion (aka; they want to follow the protocol) and that just didn't work for me; talking to a question shooting wall of professionalism. I always said that I knew they aren't allowed to steer my decisions in any way, but that I talked to them for hours on end about certain topics and would like at least a hint of personal opinion back. Nope...  Their silent gaze, making notes, often seeming far away, lost in their heads, just alienated me further. I had a practical problem, not related to bad parents or trauma's from childhood; the reality of that day was bad enough.

Frankly feel that counseling someone with a chronic, debilitating, visual illness is tricky territory and requires someone with the right balance of experience, empathy and ability to connect and talk honestly.. I was told by a female psychiatrist who I saw for a year or two perhaps even, that I should just try to be more outgoing. The fact that I missed that (I can't go clubbing or be as outgoing as I used to be with a throbbing red face mask on); she thought I had developed an unrealistic fear of it. She constantly pushed my problem in the psychological corner, when I felt it is 90% physical and as a result of this need to stay cool, and to cool my face literally, I have in effect developed psychological difficulties. Chicken or egg... But it was hard to find some councilor or psychiatrist who hooked onto that and who didn't start to dig into the past like a Freud-adept. It also helps to find a professional who has a character that matches (or complements) your own, and someone who is proactive and who can reach you. Who seems interested and dedicated to your 'case'. After the age of 27 I stopped seeing counselors all-round.

1 comment:

  1. Pictures (partly) from Boardwalk Empire and Saul Leiter


scarletnat@gmail.com, http://www.facebook.com/scarlet.nat.3