Coming Out as a Flaker
Hi Ed: I'll try and keep this as short as I can, but as someone with 15 years experience of severe P I've got quite a lot to say. I just turned 30 years old yesterday, so I've been doing a lot of thinking latelyI've now lived half my life with P, so I'm entering a new phase. Things seem to be changing at breakneck speed around me and I'm doing things I never thought I wouldlike writing this email. I must confess that I have been an avid reader of this site for a few monthsand I felt I could only write my experiences down if I was in a positive enough mood. After reading a number of other experiences I feel relatively lucky to be living in Britain with our National Health Service. Prescriptions are at least affordable even though, for me, they don't work very well.
P first appeared when I was 15 yrs oldjust a little scab on my head that would come and go. It was getting bigger and bigger though, so I finally went to the doctor. She couldn't tell whether it was P or Eczema and gave me a strong steroid-based scalp application which worked, but each time I stopped using it the P came back worse. This went on for a few months until the P on my head, and by then in my navel or belly button, cleared up a bit in the summer. I went on holiday in Scotland that summer, I went Youth Hostelling with my brother, cousin and best friend. We had a great time! But we all caught horrible colds (summers in Scotlandeh!). I was still ill when we went home. Throughout the rest of August I had no energy. Then my knees started to swell up. After about a week I had trouble walking. I couldn't straighten my legs because there was so much liquid in them. My P was also getting worse. My doctor referred me to a consulting Derm, Dr. E.a stern lady doctor on the verge of retirementseen it all. I was also being referred to another senior doctor about what the doctor guessed was some form of arthritis. For the next 6 months my P got worseup to about 50-60% coverageand my arthritis (after many blood tests and X-rays was still not diagnosed as Psoriatic Arthropathy [sic] [PA]) got to a point where my knees, ankles, fingers, toes, neck and back were all affected. Sometimes the pain was a cool dull ache, other times a swollen hot stabbing pain).
For the next 3 years, treatment regimens began and ended. I've tried pretty much everything except Methotrexate and Cyclosporinethe current offerings from my Derm. I now pretty much mix and match these days. No bloody steroids, though. In the past I've tried myriad tar preps (current favourite Exorex), different strengths of salicylic acid (very good for P on head and has nice name ung cocois conow called cocois ointmentand contains, along with the salicylic acid, coconut oil and tar. I've tried various steroid preps and don't like them anymore. Also, UVA, UVB, PUVA with horrible pills, PUVA with a bath that burnt me! I currently have my own UVB lamp, access to sun beds, and enjoy a rare glimpse of the real sun. Most people with P need to expose themselves to sunlight as much as possible. I've used various strengths of dithranolup to 12% during my 3 hospital visitsand I changed colour (English spelling sorry) to a purply brown. I felt as though I had third-degree burns and didn't get a wink of sleep for two to three weeks. I just laid there, mummified in bandages, burning up. Sleeplessness wasn't that new to me, though. When you have severe P60-80%sleep is difficult enough. Retinoids (Tigason & Neotigason) gave me terrible migraines, so I discontinued their use and am, subsequently, afraid of Methotrexate and Cyclosporin. Over the past 3 years I also had my joints drained and then pumped up with steroids and had various types of sustained release analgesic anti-inflamatories.
You might be wondering how all this affected my final years at school, with important exams and also my journey through adolescence. Well, you'd be right to imagine I became very withdrawn. I didn't understand what was happening to me. Relationships with friends suffered. I had only just finished a relationship with my first (and even at the age of 30, my last) girlfriend (but I was a shy, awkward lad anyway).
Just at this time a television series started on the BBC called "The Singing Detective"you may have heard of it. Written by the late Dennis Potter (a sufferer of the most severe form of PA, he died of pancreatic cancer). The TV series recounts, through childhood flashbacks and who-done-it plots, the recovery (clearing up in hospital) of a PA sufferer named Phillip Marlowe: Very powerful, very dark, some of the flashbacks showing difficult sexual experiences and giving the impression of child abuse. All these things put pressure on my personality and behaviour and by the time I was 18 yrs old I was severely depressed. My parents took action, being frustrated with the doctors in the UK. They took me on a month's holiday (with unorthodox treatment ) to Hungary, where my father grew up. Over that month my psoriasis and arthritis cleared up completely. The psoriasis stayed away for about a year, the happiest year of my life until now. I managed to reclaim friendships with people and I took my 'A' level examspassed better than I imagined I wouldand went off to University.
The next 8 years of my life were a complete waste. I went to 3 universities and dropped out of all of them. I started smoking and drinking and taking drugs. I did have some good times, but lost control of my P and hated myself for it. I worked in a dead-end job for 2 years during which my routine was work, sleep, smoke pot, take speed and acid. I was trying to be happy in some way. I became overweight and a bit of a mess and I was living in crappy flats full of other lowlifes.
Throughout this period I had a few episodes of unrequited love, strange friendships with women, but no physical contact and seeing as I'm being 100% honest, I'm still a virgin at the grand age of 30. Up until about 2 yrs ago I became more and more screwed up about being touched by anyone.
When I was 25, my father offered that I work with him to improve my way of life and I've been working with him ever since. Its very stressful sometimes as he's a workaholic perfectionist and I'm not (not naturally anyway) but it has given me a sense of pride. We design and manufacture special equipment for oil exploration so it also requires me to use my brain again.
About a year and a half ago because I was coming up to 30 yrs old, I decided I needed to work on my self, my self-image, my self-esteem. I've joined a Samba band and I play the caixa (snare drum) pretty well. Most importantly, I love it. I used to play percussion in an Orchestra when I was a kid and I also used to play drum kit in my brothers band (now a professional and community musician who leads a samba band in Reading, near London). I love rhythm and I love to dance. Samba music is rhythmic, physical and sexual and it's changing me. A girl in our samba band has also asked me to play Capoeira, a Brazilian (from Africa) martial art which I play badly so far but I want to become good at it. It's training me to love my body. Its very demanding physically for me. I've not done purposeful exercise for 15 yrs! And now I'm starting to do cartwheels in my back garden!
I must also admit to having fallen in love with this crazy girl who asked meme!to play Capoeira! I've never felt so comfortable with anyone, ever. I showed her my legs covered in P and she said that they looked healthy.
We've also been working closely together to start a Capoeira club in North Wales. We've become very close friends. I know we have very strong feelings for each other. For the first time in years, I kissed someone goodnight. I couldn't believe that I did it. After our Samba gigs she hugs me, and I don't want to let go. She also has a way of looking at me with those big dark brown eyes....
The only problem is that she has a boyfriend, who is also a samba and Capoeira player (and much better at it than me). She's still committed to him even though he lives about five hours away us. She seems to be trying to help me find someone but the effect is to make me fall for her more and more.
I haven't told her how I feel, but I think she may know. My problem in the past is that I've always held backshould I behave differently this time?
That of course is a rhetorical question.
I just want other fellow flakers to knowespecially young girls and guysthat they've got to love themselves. Get out there and show off those lovely sexy flaky bodies! And keep trying! Don't ever give up on a good thing like yourself. Lots of love (of the flaker kind). -Al L.
Ed's Response: Many thanks for sharing this with us, Al. I think any flaker will find something with which to identify in your story. One very important suggestion that I think is implicit in your experience has to do with presumed cause and effect. I hear from lots of flakers who recount their profligate youth and suggest this "brought on" their P. Indeed, I thought this about myself and still do in a boorishly stubborn way. But in abundant testimonies (including yours) it would appear flaking is a destined thing (a gene thing), and our sins of excess may contribute but probably never cause our P. Your P triggered some years before you engaged in those sins of excess. Mine triggered after (well, during).
Your P, and the times, and the ambiance of University life motivated your sins of excess. You believe that by not caring so much about your P at this time, you probably permitted it to get worse. Fact is, you will never know. Perhaps it was destined to get worse regardless of your lifestyle. I was already profligate when my P manifested and my feeling of guilt festered for several more years. P alone would probably not have motivated me to clean up my act. Becoming a father and a grandfather, first, and a diabetic, second, is what really turned me from profligacy to piety (used figuratively, alliteratively, more than literallynot many visitors here think of me as a pious fellow).
Many will identify with the alienation that has helped define much of your past 15 years. You remained alienated to some extent (to a sexual extent, anyway) even during your college debauch. But I was pleased to see you don't blame this entirely on your P, either: "but I was a shy, awkward lad anyway." My own experience suggestsbut certainly does not provethat P is only as great a hurdle before sex as the flaker thinks it is.
Thanks for putting in your email that your romantic quandry"should I behave differently this time?"was only a rhetorical question. That enables me to dodge even attempting an opinion. I will say, though, that a first love affair is a first love affair, no matter if it happens at fifteen or fifty. No one can be prepared for their bio-emotional response to their first overwhelming affection for another human being. It is, perhaps, unfortunate that our romantic selves are influenced deeply by what occurs, or fails to occur, in that first infatuation. At thirty, perhaps you will be more rational about everything than you could have been as a teenager or a twenty-something. But rationality has a downside, too: it's like an anti-seasoning for a dish that begs seasoning. <Sigh.> As I said, thanks for enabling me to dodge giving advice!
As for showing off those lovely sexy flaking bodies, in my youth we had a saying: Do your own thing.
I'm glad you visit often, Al, and I hope to hear from you often, as well. Thanks again! -Ed
P.S. - Happy Birthday!