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Consider How the Flake-less Feel
from Pat

I am slowly working my way down the archives after finding your web page only last month and one thing stands out to me more than any other: How hurt and upset many of the P sufferers get at the remarks and looks made from people not suffering from P.

I must admit, I was like them for many years, but then I tried to put myself in the position of not having P (not easy after 34 years). I tried to imagine how I would react seeing someone with lesions covering different parts of their body and decided it would probably be with shock and horror.

Most of them don't even know what psoriasis is so how can we expect them to know what it looks like when it can change daily? Even doctors get it wrong, so how can we expect the general public to know our disease and that it is not contagious?

Even today if I saw someone who looked as terrible as me, I would wonder whether they have psoriasis or something else like a flesh-eating virus, or leprosy, etc. etc. We hear so much about killer viruses these days, when in doubt isn't it safer to just move away?

If someone makes a nasty comment about my skin, I explain as briefly but thoroughly as I can about psoriasis. Most people accept my explanation, but if they don't their discomfort becomes their problem, not mine.

Next time you see someone giving you funny looks or moving away, try to put yourself in their shoes, it really does help. Regards, -Pat


Ed's Response: Well said, Pat. I have occasional flare-ups of empathy for the flake-less, too. Their reaction is expected. Recently I read a book titled The Meme Machine by Susan Blackmore (ISBN 0 19 850365 2, available at Amazon.com) which postulates an evolutionary engine striving to replicate thoughts and behaviors (memes). It occurred to me as I was immersed in Blackmore's arguments that the way people react to our P is probably meme-driven.

By far the majority of diseases aren't visible until the victim acts sick. Often those advanced stages of disease during which victims act sick are accompanied by visible changes, too, including skin color or pallor, sores, etc. At this stage a meme may compel us to back away from sick people. It is a replicable behavior that gets passed on like a gene because it doesn't hurt us and it just might save us from contracting the illness. Certainly this was true when leprosy was a more prevalent pestilence. By walking in a non-flaker's shoes, as you suggest, it is easy to sense this immediate first response when confronting a flaming flaker: Is it contagious?

Now, add to that natural (memetic) response, this disconcerting situation (this is worse if the non-flaker is a stranger): I (the flaker) am behaving as though I am entirely well, not the least bit contagious. I may even be offering a hand to shake, or suggesting we share a table or a sofa. In short, I am behaving as though I'm ignorant of the awful lesions so conspicuous on me. Think about this for a moment and a lot of those people who react badly, or at least unfriendly in my presence may become explainable. In lieu of knowledge, they are reacting memetically. Blackmore would argue they are probably quite incapable of reacting any other way—unless we provide the meme-antidote, which is knowledge.

But then we run into other memetic behavior that further complicates the situation. Providing unasked for information, especially personal information, is, in our culture, considered inappropriate or rude. Consider the possibilities. Mr. X is obviously noticing and reacting fearfully (i.e., memetically) to my P.

* If I just blurt out that I am psoriatic and not contagious, am I offending Mr. X by indirectly suggesting he is either stupid or indiscrete?

* If I bring up my P, am I making Mr. X uncomfortable in another way by forcing a degree of familiarity he may consider too intimate for our encounter? (I believe you care about my suffering, therefore, I'm going to explain it to you....)

* If I bring up my P without Mr. X's mentioning it, am I going to embarrass him by implying he's unable to conceal his reaction?

This list could go on. Not an easy situation. Many, many email exchanges here at FlakeHQ have considered this predicament (as you noted, Pat). Our "Don't Say This" list is full of the rumblings and bumblings that result from people's attempt to articulate their probably-meme-driven reactions to our flaking.

I do not believe there is anything like a "universal way" to resolve this communications challenge we flakers face. How we deal with the lack of communication, or the miscommunication, appears to be as personal as how we live with our disease. All I can say is, those among my correspondents who live highly visible lives must have developed very good preventive, reactive or fixative patterns of social behavior ... which is why I like maintaining this site and corresponding with everyone. I learn a lot! -Ed

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