01 May 2008

Dermo-sad

I've just spent a good while wondering if I was brave enough to write this post. You think I've been honest before, bared it all, that was nothing compared to what I need to write about, the darkest, most visible part of me. I am terrified of the consequences, and that's not a verb I use lightly, my mouth is dry and I feel slightly nauseated. See, I've been staring at my body - my skin, to be more precise. Right now, this very moment, I look at me and wonder what the bloody hell is wrong with every man who has ever fancied me. You have no idea how often I have wondered this - in fact, every single time I've known a man has, indeed, fancied me bcs really, why? WHY? There are so many women out there whose skin is a pleasure everywhere, most of them actually, why fancy me? It almost makes me distrust them, since no sane person would willingly want me, right?

I am not looking for sympathy, reassurance or tips for cure. I am doing what I do when something is bothering me, turning to my blog in the hopes of feeling better afterwards. I don't talk abt my psoriasis too much here, it's not even deliberate. I keep it where I can't see it, I suppose, though it literally stares me in the face every day. I have learnt to accept and even dismiss it, usually I register it briefly (an accomplishment in itself, considering my skin regimen) and go abt my life. I think the catalyst was my professor calling me over after class yesterday and asking me abt it. She was perfectly sweet but look here, it's the return of the Pink Panther! The Pink Panther is never gone, of course, but most of the time I only see her tail disappearing around the corner. Most of the time I block her away, this me that is so obvious to everyone else daily. Yesterday I felt like a roadside attraction again, like I belong in some colourful carnival, a modern-day bearded lady with a touch of The Scary Tunnel Ride, like people should be paying money to be able to gawk at me. Like I should be paid for their gawking, never have been. Freak? Why, yes.

Summer is coming, and my favourite season is also the one that causes me the greatest problems, all those possibilities for bare skin. I have the usual psoriasis type, plaque, which affects mostly knees and elbows. Mine doesn't look like the pictures you'll find in textbooks bcs my lesions are always well moisturised, so picture [please don't] something like big red welts, bcs the skin is not as smooth as normal skin. I also have guttate psoriasis, little drops of ache that can pop up anywhere. I began writing this and my body felt on fire, I flushed, all of me, and began peeling off layers of clothes, till all that was left was nothing much really. This nothing much:
Welcome to my upper arms. I am not brave enough to show you my knees, they're the sorest bit of me and the guttate means there are minute islands on my lower legs. When these lesions heal the skin remains darker so I always look a bit bruised. Anyway, you've now seen my arms, there isn't much difference really except in my mind, legs are always worse somehow. Welcome to my belly too. I cannot master LifeFrame in Aristides yet so I couldn't really get the angle right, but those spots you see are dark guttate lesions. The one on my side is my nemesis, I cannot make it go away. It may not look like much to you, people - people who love me, mind - keep telling me it is not as ugly as I know it is, but. BUT. I cannot imagine touching someone who is not smooth all over and enjoying it. No, that's not exactly true. I cannot imagine you touching my not-entirely-smooth body and enjoying it. I have no problem with other people's imperfections, they're not vile. Me? I see me, how could I believe otherwise? I type this and am no longer hot, my teeth are chattering. Bcs, truthfully, I am bracing myself for those of you who thought Ewwww!, I know some must have bcs I have experienced that Ewwww! close up. I am also bracing myself for Ewww! comments and the most battered part of me is even half expecting some of you to stop talking to me entirely, to never return and I know this is utter madness but I can't help it, and it kills me, this, that I am far too often made to feel like a leper, highly contagious, like something that should be locked away. I wouldn't even blame you bcs even as part of me thinks that would be just cruel and stupid, it's just skin right?, there's all this rest of me to see as well, the majority of me agrees with you. Ewww, indeed. Why subject yourselves to that? I often actually feel like apologising for being this way, for inflicting this upon people.

That bloke I had that thing with a few with months ago? He was sitting on my sofa one day, we hadn't really properly touched yet. I was wearing jeans and socks and he was massaging my feet, and suddenly he slipped his hand inside my jeans and started massaging my calves. And I froze, all of me, bcs momenst like thess aren't sexy or filled with antecipation of the good sort, they are fraught with the possibility of further hurt, what will he do when he notices the different texture, will he be repulsed, will he ask me abt it with the usual disgusted face, what if he recoils. No man ever has, amazingly. No man I have ever been with has ever been bothered by my psoriasis. I lack the words to properly explain to you how much this doesn't make sense to me, bcs I think, if faced with me, I'd flee screaming into the night never to be seen again. Why want me, especially after you've seen or felt me? Save yourself. I'm sure he felt the lesions, he is the sort that doesn't miss anything and we'd talked abt my psoriasis bfr but he just... It's impossible, it always is, but he just kept massaging my calves, he wasn't disgusted. He felt my skin and it didn't stop him being turned on by me at all. *Head explodes, big badaboom*

Sex, those first times, are always filled with a bit of anxiety, what if we don't fit together, what if I don't please him, what if he doesn't know how to touch me, OMG. In my case it's all that and also the to me very real possibility that the poor, misguided man will shrink before my very eyes, metaphorically and literally speaking. What should be exhilarating, a hand caressing my body for the first time, following its curves, is that too but the subtext is fear bcs I have little islands of pain everywhere, islands that do their best to coalesce, islands that I do my best to keep isolate, to annihilate, and one day, one day Donne be damned, this man is bound to be normal, one day this man will say I'm sorry, I can't do this and up and leave.

And I will understand.

8 furballs:

Shoe said...

Yes, I am your friend and YES I adore you, so therefore my opinion is likely not to mean as much as that of someone who isn't so invested in you as a whole person... BUT... BUT... my reaction was so far removed from 'eeewww'. It was more 'meh', as in an auditory shrug. The 'meh' was then replaced with feeling badly for the discomfort it so clearly causes you. The physical as well as the psychic. It looks painful, and the only thing that even remotely resembled distaste stemmed from imagining how uncomfortable and inconvenient it must be.

Now OBVIOUSLY, because I love you, it is utterly irrelevant to my opinion of your beauty. However, in all soul-searching honesty... I can just not imagine anyone being remotely offended by it. I'm not even the teeniest surprised that no man in your life has ever been bothered by it. It's a discoloration... so what. I simply don't see anything repulsive about it, and clearly the men in your life have always thought the same thing. I think it highly unlikely that you would ever even associate with or be attracted to the type of person who would ever be bothered by such a thing. I just can't imagine it.

José said...

Bom... que deve ser bem chato, deve, sobretudo para si. Para além da sensação física (suponho que não doerá, ou dói?) de comichão, bem se vê que psicologicamente deixa marcas.
Mas, com essa idade e experiência de vida, seria de esperar uma atitude mais positiva: afinal já teve alguns grandes amores e a psoríase não foi obstáculo. Porquê agora? E, se amanhã algum se retirar por causa disso, bom... sempre há burros em todo o lado, é uma inevitabilidade matemática ter que nos cruzarmos com eles.
Para além de ser uma mulher bonita, é uma pessoa como não se vê muito: complexa, inteligente, culta, e tudo isto sem perder a feminilidade.
Tão feminina que até tem um piercing no bigo-bigo... tsss, tsss, tsss...
Um bom Sabath
Ps. a propósito, o piercing é halachá?... ;)

Dexter Colt said...

Well, it certainly looks like a mild case of psoriasis, but I suppose nothing is mild to those who are afflicted. I can only imagine the psychic distress it causes you. But, that's because we live in a world that causes us to scrutinize our imperfections. In fact, to call them imperfections is stigmatizing in and of itself.

Imperfections?! What is perfect anyway? The air-brushed model in magazines? The other day I was marveling at a picture of a Marisa Miller. Marveling because this picture was airbrushed to remove all her moles and freckles (of which she has plenty). Give me a break! Are we to be embarrassed for not having "perfect" skin?

My body is all scarred up from years of accumulated injuries. Yet, I've never once felt these were ugly. In fact, I rarely give them a second thought. Maybe I'm held to a different standard because I am a man. But, you shouldn't feel ashamed of the psoriasis.

Vitiligo runs in my mom's side of the family. In fact, my mother is starting to show some signs. So, one day, I might start losing the pigmentation in my skin.

O que será. I'll still be me.

brooksba said...

I want to comment and let you know I read everything you wrote about your fears and anxiety around your psoriasis. I'm not entirely sure what words to use because I know you stated you're not looking for sympathy or reassurance (and I have no tips). I do know that you like to write to get out emotions, to vocalize, and to come to terms with feelings. And you're brilliant at it. I was able to understand your fears. We all have things about ourselves we are afraid to let others see and I think the reason why the men have not had the reaction you think they will is because your beauty radiates through your personality. I've never met anyone as brutally honest with herself and others. And while you don't discuss your psoraisis much, you've never hidden it. That makes it easier for others to understand. I wish I could be as bold as you - I do admire you. I love you too. I know this was scary to write and it took your courage to share it.

Savtadotty said...

Johnny, Here I am having lived with psoriasis for 70 years (!) and your post still speaks to me. For a brief few weeks after my recent hospitalization I had perfectly clear skin, and the difference in the way I felt and the way I saw people seeing me validated my feelings: psoriasis is disfiguring, and most people have difficulty getting past it when they see it. However, and it's a big HOWEVER, it also works as a filter: it is literally superficial, and most people who are turned off by the superficial will remove themselves from your life without your having to do anything! This leaves more space for true friends, true lovers, and keeps you honest!

Lioness said...

You lot, am trying very hard not to cringe now but the truth is, yesterday was real and it will come again, no need to be embarrassed abt the fact that sometimes having psoriasis and being made to feel like a leper de-rocks my world.

Manuela, I think it highly unlikely that you would ever even associate with or be attracted to the type of person who would ever be bothered by such a thing. WORD. Read the newer post, where I sound far more like me. Just a quick note for the future, don't be dismissive if you meet someone with psoriasis, some people really suffer and it's not necessarily related to how much they're afflicted, but to how they cope with it. Some cope poorly on not much, others are covered by it and fine. But the suffering it causes is very real, even if RIGHT NOW I cannot quite understand this post.

José, porquê agora? Não faço ideia. Acontece todos os anos mas nem sempre consigo pôr o dedo no catalizador. Comichão não faz, as mãos doem. Com doenças crónicas é impossível ter sempre uma atitude positiva. Quando desmorona, desmorona a sério. Mas passa depressa - pelo menos no meu caso. Se conhecer mais alguém com psoríase não lhes fale na atitude positiva, é das coisas que mais nos faz penar, essa ideia de que basta encolher os ombros e think positive. Quando é mau é mt mau, eu é que tenho a sorte de raramente ser. Quanto ao piercing, nope, absolutely forbidden, nada de auto-mutilações. Na altura eu não sabia, e, francamente, mesmo que soubesse não teria feito diferença, gosto do meu piercing e pronto.

Dexter, you haven't read the new post of course but yes, the mental distress, when happening, is huge. When I feel downtrodden it is not bcs I feel imperfect, it's bcs I have a chronic disease that has caused people to be afraid of me. Feeling highly contagious on a regular basis has an impact, and sometimes it is all brought together and yesterday happens. I too love scars and tiny imperfections, they make people more them. I have never felt ashamed though. Bothered, yes, sorry that I am inconveniencing others, yes, ugly as bloody hell, definitely. Ashamed, never. And, if someone airbrushed my freckles I'd maim them, I work hard at obtaining more! O que será? Será bom, absolutamente.

Beth, what I meant was, I wasn't writing this post so that you'd give it to me, not that you couldn't if you felt like it. Psoriasis is a shit, empathise away. I have tried to hide it in the past but not anymore - well, am not given much choice now but regardless, it's there, why even bother. I'm glad it's helped others understand, and glad you told me that. You're sweet.

Savtadotty, I thought abt you a lot writing this new post this morning, part of me wanted to feel guilty for feeling this way over my little bit of skin when you've had it so badly so very recently, but most of me knows I have an absolute right to grieve being disfigured, yes, I saw The Singing Detective and it scarred me bcs by then I knew you can never know how your psoriasis will evolve, it can go from nothing to almost everything almost overnight, none of us who have it can be surw we'll not end up like that. This is the body I live in, this is what I live with, I am absolutely entitled to whatever feelings arise from it. And yes, absolutely a filtre. I have never lost anyone to psoriasis but it has very often been a fast eye-opener. Perfectly clear skin, cannot even remember that. It's almost worse than not having had it at all again isn't it, to then have it go back to its the old self. I don't know what I'd choose really. Eh, like I have a choice! :D

Diana said...

I read this after the one above. I'm just letting you know. And, as it is to the rest of us, it is just a part of you, our beloved Johnny, who makes us laugh at the absurd and become angry at the wrongs. I'm sorry it is a part of you only because you don't need the aggrivation and breath holding (brief though it may be), but if you have to have it, at least you are able to fling curses and laughter at it and let us do so, too.

I'd share a wetsuit with you any day.

(Plus, did you know you could actually CURE it by thinking reallyreallyreally good thoughts? 'Cause that's all you really need to do. That and relax.---Sorry. Couldn't resist.)

Lioness said...

Diana, I'd share my last piece of bread with you, I'm nobler! I WIN! And the cursing happens a lot, not that you didn't know that already - especially after the positive thinking or relaxing or, really, SHOWERING MORE OFTEN - if I weren't am obvious pig I wouldn't be afflicted, obviously. People are idiots, yes? You see loads of those from the other side of the desk.