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537 Lesions and Lucky
from Johnny-from-Portugal

Hi Ed and all. I just read Laura’s email [Be A Role Model for P-Kids(0102a.htm)] and realized to my embarrassment that emails are posted, not read by Ed alone, so I’ll try and be more articulate this time [in reference to Where’s Our Motto and List of Definitions].

I too have mixed emotions about Laura’s email. I have had psoriasis since I was five. I do not remember not having it. One of my earliest childhood memories is having my hair washed, then sitting on a stool grinding my teeth while my mother rubbed Alphosyl into my scalp, and then going to wash it again, every day. I loathed it. It left me with a permanent dislike for everything to do with cleanliness.  I hate taking a shower, I hate taking a bath, I hate to wash my hair, I hate to apply creams, I go through the daily rituals more than grudgingly regardless of how good it feels afterwards. (Amazingly, some well-informed people still give me bath salts and I want to throttle them every single time. I’m sure one day I will.)

I live in Lisbon, Portugal and we are blessed with quite a lot of sun and a beach 20 minutes away. When I was growing up, I only had psoriasis on my scalp and very minor lesions on my knees. When I was about 14 I went to see the umpteenth dermatologist and somehow left the hospital feeling so empowered I changed into a skirt and strutted defiantly around the neighborhood. But when I was 14 I did not have that many spots. I had belly spots and some on the back but all small, compared to now.

I had a toxic fever in ‘97 and got my first guttate, which has been with me since and joined hands with the regular lesions. I lived in Eilat, Israel for 3 years and ran out of excuses for wearing pants in the summer in a place where everyone runs around half naked. I managed to grab enough sun for some major lesions to start clearing so the whole thing cleared after a while.  I don’t know if we are all the same but my psoriasis is quite the empathic little thing, if I get a lesion on one side of the body the other side follows, and the same goes for clearing. I moved back to Portugal and here we are again, 537 lesions and counting.

I am one of the lucky ones. I counted 537 lesions, yes, but the more I know the more grateful I am. My psoriasis is sun-responsive.  It does not affect my joints, face or mouth. I have 4 spots on my neck but they are clearing. It did affect my feet and hands once but it’s gone. My hands are a bit disgraceful but not all covered. I wear black — and discretely remove man’s best friends once in a while. I do not have to take steroids or do chemo. I very rarely itch and when I do it’s stress-related and it’s only my knees. I never leave a trail.

I have never been rejected by a man because of my skin. I have friends who wanted to touch it and see how it is. I had a boyfriend who kissed my lesions and made me cry, for once not out of sadness but because I felt accepted (I am over crying over it).

Now, all this being said, I have been made to feel like a leper more times than I can tell you. I have been asked to leave pools. I have had people change seats. I have had mothers snapping their kids away from the psoriatic jaws of death. I have had colleagues not wanting to dunk their jumpsuits in the disinfectant container along with mine because one never knows.

I made up my mind when I was 17 that I was never going to have children because I would not be able to stand knowing I had been responsible for their suffering should they turn out to have P.  I have changed my mind since.

I dread the summer even though the cold makes me look like the cheetah from hell. I am in vet school and dread finishing it because we have this tradition called “shredding” where, when our colleagues realize we graduated — i.e., they see our grades — they take scissors, teeth and whatever else and shred our clothes so that men and women walk around buying drinks practically in their underwear.

Imagine the welcoming faces. I am branded, and Psoriasis shaped much of what I am today.

I am having a tremendously hard time with what I need to write next. It is not our habit as a culture, or mine as a person, to be this revealing to strangers, but I feel it should be addressed and I owe you all because some things on this site have moved me so and made me count my blessings — all 537 of them. If I help but one of you, it will be enough. If I don’t, well, you don’t know me anyway.

I was at war with my body for a long time — and, in all candor, I am lucky that I am pretty. This is the rational view. I know so because people tell me so. I have often been accused of being arrogant and conceited because I am tall, blonde and blue-eyed in a country where most women aren’t. I haven’t come to terms with the irony of it yet (the same genes also gave me the psoriasis). I do not feel arrogant or conceited. The emotional view, deep down, is, rather, what is wrong with every man that ever felt attracted to me. I was never rejected, true, but living in a Latin society and being shy and psoriatic, of course they are the ones who have to exert themselves, so by the time they come to me they have already realized there is something amiss, or more accurately, aplenty. Or so I hope.

I made peace with my body a while ago. I talked to my psoriasis and told her — it is a female in Portuguese — that she could stay for as long as she felt she had to. And then, when she was ready, she could go. And I started kissing my knees goodbye (I’m over that too). It’s still here but I live better. Still, sensuality and sexuality are, depending on the state of my skin, a moment for reliving my certainty that I am barely a woman or a blunt pathology lesson when a man is shown what awaits him — usually knees but I could use my legs now too.

I have been boyfriend-less for a long time now and I hope to remain so because my life was turned upside down in the past 6 months and I cannot bear to think of dealing with bare skin and the whole chaotic mess — and anyway, who would look at me, right? My biggest problem is that, I know, I so desperately know that even when they say it doesn’t matter to them it is not so because it matters so much to me and I hate the way I look so how could they possibly not? I would not have a problem with an amputee, for example, but I know how I feel about that so I can be sure. I also know how I look so what the hell does it mean that it doesn’t bother them? Bloody, lying perverts.

I have only recently realized I should see someone about my feelings regarding all this and so I will, eventually. And now you will all laugh when I say that I truly am one of the well adjusted. I am, I just had to give you the whole picture at its most dramatic.

I usually inhabit the gray areas. And I would not have a problem talking to a kid about it, or an adult with psoriasis. I never known anyone who has it, and some regular empowerment doses could have helped me tremendously. But I believe it is my right to hide it if I wish to. I believe it is my right not to want to talk to anyone about it if I don’t wish to. By the same token, I can understand what that man felt. He felt exposed and raw, and learned once again that psoriasis is our first and ultimate frontier and only too visible even when hidden. It gnaws at you.

I also understand how Laura felt, especially because it concerns her son, I really do. However, and I don’t mean to be disparaging, psoriatics will always have to stand a load of crap and it only gets worse with age because our problems grow with us, and most often psoriasis does, too. We have to protect ourselves and we all create strategies. I have phases where I can even show my lesions and too bad if it’s ugly but, Laura, willing as I am to help others through my experience, on a bad day even your son’s question would sting because we do sometimes forget we have it but we are not allowed to forget it for very long, and then it doesn't matter where the comments come from.

I just decided it was better to be stung than to remain sitting in the dark, oy vey. It is no tragedy but it’s my shifty soap opera. Fortunately, I get to turn it off because life really is good. I would be happy to correspond with your kid through you, Laura, if you feel it could help him to have a fellow psoriatic in a far away land.

This, of course, is only my sensibility, others surely feel different. I will stop now before I am banned for taking up too much archive space. I apologize for writing too much but, do you know, for the first time in my life I have been talking to people who will understand exactly what I feel? And Ed, I did not mean to criticize your “site-hidden-ness” choices, I was just so happy I found it again, my former searches didn’t get me anywhere. Keep it a P-secret, by all means, you’re bound to have your hands full as it is, and isn’t it more fun to be part of yet another exclusive club? ;-D 

Good night to all, and thank you. –Johnny-from-Portugal


Ed’s Response:  I am glad to see Laura’s email posted last month has motivated so many of us to reflect on our own situations, to consider how we might have responded had we been the stranger her son, Hunter, approached.

In this email, Johnny, you have painted a complex and compelling picture of you and your P.  I have read it many times.  It rewards re-reading.  There are other emails in the archives here from female flakers expressing what it is like to be female and psoriatic, and all of them make me ashamed of my complaining.  We men don’t get it.  We can’t.  But we can appreciate the exposition, especially one so artful as yours.

I am at a double-remove from your situation because I am both a man and one who did not manifest P until later in life (39, actually).  My P came after my years when sex mattered most (which, for me, I’d say ranged from ages 17 to 27).  Though I have tried, it is not possible for me to sense with any precision what my life would have been like had I been a flaker during these years.

But I am not altogether alien to the sexual uncertainty P can induce.  I survived a “year of living dangerously” in the mid-nineties, between marriages.  This was a mid-life crisis of sorts, made more than typically interesting by my own new identity as a flaker.  Without the flakes I had reason to doubt my ability to be an unanchored sexual creature; with the flakes I had no self-confidence whatsoever.  But I have come to count on a certain psychological defense mechanism.  I call it shifting into research mode.  There’s probably a clinical name for it, but I don’t know it.  What happens is, when I’m about to encounter a potentially fearful or harmful situation, I consciously split off a piece of my mind and place it behind a force field, a transparent barrier through which I can observe whatever might happen, but through which no slings or arrows of outrageous misfortune can reach me.  From this mental vantage I can safely “study” my emotional responses, my actions, my reactions.  It places me at a distance from my own fear or pain.  It is not that I don’t feel these things, and I hope it doesn’t mean I repress them; what I hope is happening is merely a healthy form of cognitive sedation.  I spent most of my “year of living dangerously” in “research mode.”

In research mode I was able to face the fear of exposing my P to a new intimate acquaintance and I, like you Johnny, was never rebuffed.  But it did make me wonder about the sensitivities — or sensibilities — of some of my partners.  Men, however, are less likely to think of their girlfriends as “bloody lying perverts.”  We  might characterize those not repulsed by our P as “imaginatively kinky.”  At the time, having survived the intimate exposure, I just thought my mates were very kind.

Being a man-about-town proved more than I could handle and I was happy, at last, to find a woman who was genuinely interested and pragmatic about my P.  To summarize many months of punctuated discussions, Clara’s final tribute to my self-pity went something like this.  “You’re doing what you can.  We can’t cure it.  Let’s move along to something else.”  And we did.  Or, we are.  Some three-plus years later, Clara manifested P herself.  In spite of her being such a logical creature, it was interesting to watch her struggle with self-acceptance.  It underscored the emotional difference between having it and accepting that a loved one has it.

It is indeed as you have called it, Johnny — our shifting soap opera.  And yes, I like to think of FlakeHQ as a bit of an “exclusive club.”  Though I am no longer a drinking man, picture me if you would, Johnny, with a snifter in my hand, which is raised out and above my head.  Here’s to you, Johnny-from-Portugal. And nothing but the full draught down will do.  It’s a fine brandy, bitter-sweet, and warm going down.  -Ed

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