Hiding in the Shadows: Living with Severe Psoriasis

Living with Severe Psoriasis
There is always a look. Always a question. Always a flash of disgust.
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“Oh my god, what is wrong with you?” or “Are you, like, a leper?”

People actually have asked these questions. They aren’t isolated incidents either. I have been asked close approximations of these throughout my life.

How do you explain to people that you cover yourself from head to foot out of habit? Or, better yet, how do you explain to them that you have a problem with your immune system and not have them jump to thinking it could be A.I.D.S. or H.I.V.?

It is simply easier not to.

I start my day like most people do. I beat up the alarm clock and shuffle into the bathroom and take a shower. The burning itch won’t start for about thirty minutes, but it is part of the process. I have the option of ‘bathing’ in oils or lotions. Those have their own problems. While they can alleviate the symptoms for a few hours, they tend to bleed into my clothes, staining them, and they smell. Even the pleasant ones can be overpowering if too much is present.

No matter the temperature outside, I slip on a long sleeved shirt, conscious of the ‘dust’ coating the floor around my feet. Even when I lived in the desert southwest, long sleeves were typical. You can imagine how many looks I receive in the height of summer. A standard excuse is to justify it as a way of staying cool, like a Bedouin nomad clad head to foot in flowing robes. It is still disconcerting when small flurries puff out of my sleeve, so I attempt to keep gestures to a minimum.

To most, it would seem that the itching would be the worst part, a constant burn that cries out to be scratched and then burns worse once it has been. However, after living with it for over 30 years, the itch is something that blends into the backdrop of my life. Once, it created such madness in me, even though it was less prominent than it has become.

In my youth, when the patches weren’t even that large, I attempted many things to ‘cure’ myself including burning them with a flame or heated bits of metal, slicing at them with a razor, and combining any and all forms of detergents. If I’d had access to acid, I’m sure that I would have tried that too. However, it was never the burning itch that caused it to be so.

Most adolescents worry about acne.

Since that time, psoriasis has claimed at least 25% of my skin, and since moving to a climate not conducive to the glaring of the sun, it is advancing its progress. Now I have to battle it as it moves up my face and head. I use a steroid based gel that can keep it in check, but only for a couple of days. I have to use it sparingly, not only to conserve it, but to also avoid some of the side effects, like thinning skin. It is especially a problem around my eyes.

To an already introverted personality, psoriasis taught me to live further in the shadows. That is . . . or was . . . the worst part of it.

From the time that I was diagnosed, I went through every known treatment for it, including my self-attempts. Coal tar baths were a standard thing in my childhood. Using shampoos and treatments that looked like grey sludge and smelled worse was a nightly affair and stayed with me enough to see others’ noses crinkle when they caught a whiff. Over the years, the sludge turned to a burnished clear liquid that looked like tea and smelled less pungent.

It was found that the sun produced some astonishing effects. Mostly, I was told it was the vitamin D that it produced in the skin that made it clear up. UV treatment was supposed to give me two to three years of relief. It didn’t. I am being generous by saying it was six months. And the burn I received from the treatment was worse than anything that the psoriasis ever provided. In an effort at using that giver of relief, I have, on more than one occasion, suffered second degree sunburns. The blisters formed from the lesions along my arms, shoulders and trunk. I believe the relief, afterward, was about three months.

I remember when it was found that transplant patients with psoriasis had a remission once they went through the operation. Knocking out the immune system, it seemed, was a step in the right direction. I was thrilled. Of course, when the patient’s immune system recovered, so the psoriasis came back. Some of the newer pharmaceuticals mimic this. Of course, the side effects include increased risk of infection, among other things.

Sometimes, the treatments do not work. In my case, they give only a temporary reprieve, but as I grow older, it seems the more resistant to treatment my psoriasis becomes. In the end, it is a matter of learning to deal with the issue; something I have been doing all my life.

I’ve known others that are less worried about covering up their marks, but mine are quite extensive and while there is a bit of old insecurity, my decision is mostly based on the continued reactions of others. There is always a look. Always a question. Always a flash of disgust.

In this country, we strive so valiantly to be perfect. It is in every advertisement that we see. Use this soap, it makes you cleaner. Use that medicine, it will make you sleep better. Buy the car, you will have status. We often don’t want to think that there is nothing that can be solved, but, as yet, psoriasis is not something that can be cured simply because, like many diseases and ailments in this day, it is not understood yet.

So, you learn to live with it; live in the shadows of normal society and do what you can, small things, that attempt to hide yourself from probing questions and silent judgments. When I’m asked if I have leprosy, which happened recently, I force a laugh and give them a quiet explanation of how my skin replicates faster than it should. Or I tell them that I have a vitamin D deficiency.

Sometimes, I just tell them it’s psoriasis.

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