What Do You See?
by El G.
posted September 2002

"Psoriasis compels narcissism, if we can suppose a Narcissus who did not like what he saw." -John Updike, Self-Consciousness.

So you look in the mirror every day. What do you see? Do you see yourself? Or just parts of you. Do you rail at the image, hoping it will be different, better, more like someone else's. Or can you appreciate the smooth skin that covers you?

I see an ever changing landscape of scaly horror. A body-cage that compels and constricts my life. A stranger.

Body image is something that is talked about a lot, especially among women. We know that we are not supposed to be concerned with it, that being a size 14 is normal, that diet is a dirty word.

That is all well and good, but let's get real. We all do it. We diet. We think about it. We hide parts of our bodies that don't fit the idea in our heads. We still believe that the thin woman with the cool clothes in our class is better off than we are. We still judge each other by the size of our thighs.

Imagine that all of this Bridget Jones monologue has an added refrain of spots and soreness; a melody singing above it of pain and uncertainty. What would you do?

Someone online that I know described what living with psoriasis is like:

1st - Get a good sunburn.
2nd - Finely crush up potato chips.
3rd - Mix chips with Tabasco sauce.
4th - Apply mixture to sunburn (don't forget to put lots of it in your shorts).
5th - Lastly, with full application, try to sleep at night.

(From alt.support.skin-diseases.psoriasis)

I laughed out loud at those words; loving the will to find humour despite being in pain that permeates the online world of spotty folk. A delicious sharing of the weird and wonderful world of psoriasis.

What do I want to tell you about? Why am I writing about this private yet so horribly public part of my life? And why in a women's issue of Vertigo?

Because I am a woman. Because being a woman, I was socialised to care about how I look, to cover unsightly blotches, camouflage unwanted bulges and exfoliate madly. And then at 19, psoriasis changed all of that, forcing me to change how I thought of my body.

When I look in the mirror, I don't see me. I see how far the spots on my face have progressed since last night. I see the flakes around my ears and eyes. I pick at them, desperately peeling back the ever present layers of my skin.

When I dress in the morning, I don't think about style. I think about whether the seams of my jeans will rub against my raw legs. I think about covering the mass of sore, red skin on my arms so I don't have to face the stares of Joe Public.

When I put my shoes on, I don't think about their relation to what I am wearing. I think about how far my aching joints have to carry me today. I think about the cracks on the soles of my feet and the swelling of my ankles.

So my narcissism takes a different form to most. I stare at the hated image, wanting it to have changed, to just be normal for a little while again.

See, that is the awful irony of a disease like psoriasis. Sometimes I am well. When the drugs and other treatments work, I look fine. A few lone patches of psoriasis serve to remind me that my skin is still not normal, but only I see them.

I love and hate those times.

I love being well. Love being able to walk down the street. Love being able to be concerned with ordinary things. Love wearing lipstick and high heeled boots. Love dancing at a band. Love working and studying. Love being a part of life.

Why would I hate being well?  Because it makes being sick so much harder.

Most psoriasis treatments have serious side-effects and a limited time that they are effective. So no matter how much I try to squeeze into those well times, I know the day will come where I wake up to find a new spot (or two or twenty) has appeared and the whole process has to start again. I try to ignore them, hoping it will be different this time and won't get as bad. But it always does. And it is always worse than the time before.

So after ten years of this cycle of well/sick I am at a strange place. I have tried all the available treatments and they are no longer working. I am on high doses of two of them, just waiting for some new drugs from the States to come here. That is at least three years away.

Most of this year I have been sick. The longest time so far without remission. I ended up in hospital at the end of last semester. That was the eighth time in ten years. And I was the sickest I have ever been. I couldn't walk, had to be wheeled around the wards. I was on narcotic pain medication and couldn't stop crying.

After I got out of hospital, I was the best I had been in months. I ran around beaming at the world, my friends as excited as I was. But a few weeks later, I slipped into a fear laden funk.

You see, I am terrified. Terrified of starting again. Of getting half way through something and being forced to stop. Of being dependent on those around me for the basics, like shopping and cleaning. Of never being able to have a real life.

It is hard to start again. To try and hope once more that this time will be different. That I can have some fun for a while. 

I look at myself in the mirror all the time. Checking to see if the spots are coming back. Worrying over ever little itch and twinge. Touching the smooth skin like a talisman against illness. I am in a kind of limbo between sick and well. Too scared to dive back into the world, but refusing to live the life of a patient.

I want my body back. In whatever shape it comes to me. I want to know that it will work from one day to the next.

I want to worry about my thighs, my weight. I want a bit of Bridget Jones, just a bit.

*****