Communications (Mar/Apr, 1998)

Don't Call it a Disease
from John

Ed: Thanks for running a great web site. I thought that I would stop lurking and start contributing. I have been afflicted by P for the last 15 years. It first appeared when I was in my 30's. So far, I am the only person in my family to have P. Like most, I maintain a thorough disregard for derms. Not anything personal, I just know how limited their help can be.

Stress. I have been following this thread for a long time. There are several things that help me. The first is Positive Mental Attitude. When people ask me how I am, they almost always hear either, "Peachy Dandy," or "If I was any better I'd be twins." The other thing that helps is the new spa. Right now it is set at 100 (too warm actually, but the wife likes it). I tend to sit back for an hour or so then fire off the jets. The flakes seem to melt off.

Part of reducing the stress is to feel good about yourself. I do. I am one of those people that does not try to hide the fact that I have P. Almost year round I wear t-shirts. My arms are about 35% covered. I don't feel stared at or avoided. Their are occasional people that ask if I've been burned,
but when I explain what it is, most either accept it and we move on, or it prompts them to say, "Oh yeah, my ..... has that on his head." More people are aware of it than you think. None of my friends are afraid of it, or seem to be bothered by it.

There is only one incident that I can recall was annoying. I had stopped at the local watering hole to have a couple of beers. There was a guy there who was well on his way (I'm being polite). He asked about my P, so I explained what it was. He promptly asked if I had been in the military. So I told him that, yes, I had been.

He starts with "I knew it. You got that from working with nuclear material didn't you?"

I told him that the closest I have ever been to radioactive material was an x-ray. I had been in communications in the military. This didn't persuade him. In fact, he started to get belligerent. So I told him that my military service was classified and I was not allowed to discuss it. (It was classified, by me ... classified "boring" [;-^].) He sat there unmollified, then started up again. So I looked him in the eye and said, "Sir, I have told you that my military career is classified and I may not discuss it. Since you are obviously attempting to discover more information than that, I will need to get your name so I may report this to the proper authorities."

He left in about ten seconds flat—to the refrain of my "idiot!"

One thing that may work in my favor. I NEVER refer to P as a disease. Until someone shows me a germ or virus that causes P, it will remain a "skin condition." The word "disease" is very negative and people react badly to it. -John


Ed's Reply: Your story, John, is a testament to the power of positive thinking. (Is that trademarked?) You sound as though you have assimilated your condition as effectively as other robustly optimistic folk assimilate a withered limb, a speech defect, crossed eyes or obesity. I hope you are a parent because such strength deserves to be passed along by close example.

Funny you should mention the spa as a palliative. I owned a hot tub for the two years immediately prior to the onset of my psoriasis and when the symptoms first appeared I remembered being told that, for some people, hot tubs can cause excessive drying of the skin. Blaming my hot tub for the onset of the flaking probably postponed my acceptance of the reality. As a hot tubber, my preferences were 104-degrees and 20-minute soaks, preferably at night, outside under the stars or—sounds awful but it was luscious—during a snow storm. The hot tub went away with my first marriage, but years later—then a fully-aware, 60% effected psoriatic—I would often dream of getting another one. I couldn't afford one, then, but it was easier to deny my impulse by thinking flakes would continually jam the filter. I can't help but wonder, though, what the results might be if I used a hot tub spiced with Dead Sea Salts.... (No doubt: corroded plumbing works!)

In an as-yet-unpublished essay on the semantics of psoriasis, I addressed the issue of "disease" versus "disorder" and concluded this: It's a "disease" if the object is to raise money for research or to be excused from doing something you'd rather not do. It's a "disorder" if the object is to have it overlooked or dismissed as "not pertinent at the moment." Examples:

Son-in-law: "Dad, can you help us move on Sunday?"
Ed: "Sorry, son. It's this damned disease...."

Attractive flight attendant: "Mr. Dewke, do you need to sit in a row all by yourself?"
Ed (seated knee-against-knee with the flight attendant during take-off and landing): "No, not at all. This is just a disorder ... not contagious...."


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