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What Can People Read that will Make Them Understand?
from Kathleen B.

Hi Ed:  My P started when I was 9 years old, with a small spot on my scalp. With the passing years, hormones, and associated stress, it soon covered the back of my scalp. I was never properly diagnosed.

At 27 I was diagnosed Bipolar, Type 1 (manic-depression), and I went on lithium, which helps me so much I don't want to go off it. Yes, I've tried most of what's out there — I'm actually taking more than one mood stabilizer. The bottom line is that I'd rather pick mental health over physical health if given that harsh choice, not that P doesn't have its psychosocial implications. But I digress.

With lithium, my P did nothing short of bloom. It spread upwards and outwards across my scalp, down the back of my neck, behind and on my ears, forward from my ears onto my face on one side where a sideburn would be. I got lesions on my forearms, my lower back, and my thighs, including one that looks like it's making its way perilously close to my crotch (please, God, anything but that!).  A lesion on one hip ... I'm sure I'm forgetting something, but, as you can see, I have a bit of a problem.

I have no insurance, so I can't do much else but the coal tar, salicylic acid, Vaseline, baby oil shower cap routine, along with gentle bufpufing of some of the more stubborn lesions.

OK, that was all by way of introduction. My main problem, since I was 9, has been people telling me not to scratch, with questions about me leaving behind my "bad dandruff."  I've been leaving behind P scalp flakes since I was about 12 or 13.

Do you know of any books, or pamphlets even, that would help non-P relatives understand psoriasis, especially the fact that we can't control when, how much, and where we will flake — and also the urge to scratch is essentially impossible to ignore?

I'm writing not about the parents of a child, but about the parents and other relatives of an adult (me).

Perhaps I might print out some of the letters on FlakeHQ to show them all the various ways P can make life miserable.

If you have any suggestions, any and all will be much appreciated.

Sincerely, -Kathleen B.


Ed’s Response:  I’ve read and re-read your email several times, Kathleen.  You’ve made me think.  Think hard.  This is the question I’ve been thinking about. 

Do you know of any books, or pamphlets even, that would help non-P relatives understand psoriasis, especially the fact that we can't control when, how much, and where we will flake — and also the urge to scratch is essentially impossible to ignore?

There’s some stuff that comes close.  The National Psoriasis Foundation’s brochure titled “A Guide to Understanding Psoriasis” comes close.  But it isn’t the answer to your question.  (You can download this brochure as an Adobe Acrobat file from the NPF web site, if you are a member.)

I’ve been told by some folks who’ve read my little memoir, Flake: Confessions of a Psoriatic that it helps explain P to non-flaker friends in a non-clinical way.  But, though it’s short, it’s not short enough to be an answer to your question.  (Flake is available here.)

I think The Answer to your question doesn’t exist — yet.  What you need, what we all need at some time or another, is a short, brochure-length statement that describes and explains what other people are looking at when they look at a flaker.  It will describe the visual symptoms and the non-visible symptoms.  It will address some of the more common flaker behaviors (like indefatigable scratching). It will talk in general, non-clinical terms, about what flakers do to treat their disease. 

In other words, The Answer will be something written about us and to readers who are not us.  The only thing The Answer will assume is that the reader is interested to know why we look the way we look and act the way we act. 

I can help to facilitate the creation of The Answer, and edit it, but I can’t create it all by myself.  I think this is something we need to do together.  I mean, anybody who visits FlakeHQ and has an interest should be able to put their two cents into this thing — The Answer.

Here’s how we’ll go about it.  I’ll draft it.  I’ll post the draft here as a Microsoft Word file that people who use the Internet Explorer browser can download automatically and import right into Word.  For people who don’t use IE, or Microsoft Word, I’ll make a vanilla file version (.RTF) that you can get by emailing me.  These download and import versions are intended for people who want to seriously contribute to the document by using their own word processors and returning their changes to me.  For those who may be interested in simply reading the draft on-line and emailing a thought or two, I’ll also post a version here as another web page (.HTM).  By the last update of FlakeHQ this year (Nov-Dec), we’ll complete the document and I’ll publish it “fancy” and make it available here as an Adobe Acrobat file (.PDF). 

We can come up with The Answer, Kathleen.  In fact, nobody is better-equipped to do so than us.  –Ed

P.S. — In the meantime, Kathleen, if you want to print and share pages from FlakeHQ with others, please feel free to do so. -Ed

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