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‘Out of the
Closet’ Since Reading FlakeHQ
Dear Ed, Thank you so much for your website. I have been reading my way through the site since June. From the beginning, the effect of your essays and the emails from people from all over the world and all walks of life has been to make me — metaphorically, at least — much more comfortable in my own skin. (I know, but I had to say it.) I have spent 15 years not only hiding my P from the outer word, but as much as possible hiding all signs of it from my family. Heaven forbid my kids should see little piles of flakes. I’d sit on my hands so as not to scratch my scalp in front of my partner. I’d go off to read in another room or on the deck, just to have the privacy to scratch and pick as I liked. I was so ashamed, so sure that I would gross them out — not so much the lesions as the flaking dead skin, the messy trail, the constant scratching…Always apologizing if flakes were found around the house.
I actually cried to read about the families who joke about it — the partners who want to ‘play connect the dots,’ the kids who refer to oatmeal as psoriasis — but then I started to take the flaking less seriously myself. In fact, I guess I’ve been empowered, ‘come out of the closet’ as a flaker…what a relief to have a more ‘get over it’ attitude. So thank you all.
My basic story is: one nasty spot behind the ear at 27 years old during a time of great emotional stress…about 25% covered and PA in one hand by 30…the PA resolved itself (thank you thank you thank you) by 32 and most of the time I believe that if that is the only remission I ever have (if I never get PA again but always have P) then that is compromise I can live with. I’ve never had a full remission on the skin front. If you don’t count my scalp, which is always pretty much a solid helmet of P beneath the hair, I range from about 10-20%. In January ‘05 I got guttate (due to strep) all over except my neck and face and still can’t seem to get rid of the spots.
I’m 41 now and I’ve done all the creams and sprays and oils, the herbalist, the light box, the naturopath — and had weeks of giving up, doing nothing at all until everything is so thick and tight that I crack and bleed and cry. I’ve investigated the systemics but I am afraid of the immuno-suppressant aspect. I have just ordered Pagano’s book — I don’t know if I have the will-power for the diet, but I am willing to at least read it through before deciding I can’t do it.
Once again, thanks so much — your humour and your compassion and dedication (in chronicling your experiences and in responding to the emails) is both inspiring and a great comfort. -Alexandra W.
Ed’s Response: On behalf of ALL of us, Alexandra, I happily take the bow, say ‘thanks backatcha,’ and ‘welcome aboard.’
Shedding the stigma associated with being a flaker is a positive thing, I think. When we can leave behind the embarrassment and depression we can replace those mind-wasters with proactive thoughts and actions. The other day someone — a passing acquaintance — made some comment about my skin and I said, without dropping a beat, “I’m sorry, but I’m doing the best I can.” He probably hadn’t the foggiest notion what that response was supposed to mean, but it did shut him up! :) -Ed