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California Flaker Creeping Into Beach Scene
from Ellie

Hi Ed.  I've been reading mail on your sight for a year or so now and am always encouraged when I read mail from fellow flakers.  It seems we are all in this together and although we never really get better, we all remain willing to try new things in regard to our P.

I have lived in California for five years now (relocated from New Jersey) and thought the warm weather would be my cure all.  Well, I've found that living with P here can be harder than on the East Coast where all people naturally wear long sleeves and long pants a good part of the year.  Here in CA, summer lasts 80% of the year so we wear less, longer. 

This summer I decided the beach was calling and I and my P went often.  It's really ironic that sun and salt water, which really helps my P, includes being in public with my P exposed, but I have decided to live life in the moment and am better for it.

My children aged 14, 11 and 10 are very supportive and don't seem to notice or mind, but I'm still not brave enough for them to bring their friends with us, and I go to a beach a little further from home than our friends and neighbors do.  Maybe by next summer, I'll be ready for this next step in my acceptance of my situation.  I feel I've missed out on so many activities over the years that include the outdoors and sunshine due to P wardrobe difficulties.  It's taken me over 20 years with P to get to the point that I don't always feel I have to hide it.

Can you offer any additional suggestions or encouragement to help me continue my journey out of hiding?  Keep sharing the good word with all of us! -Ellie

*****

Ed’s Response:  Well, Ellie, the first thing I asked myself was, “How would you make yourself comfortable with Beach-going, Ed?”  I concluded I probably couldn’t and that you deserve a rousing round of applause for doing so.  (If you haven’t yet read Beach Daring in the Archives, you might find it interesting.  It’s from a California woman in a similar situation.)

P is one of those diseases that can have a pronounced “social symptom” — specifically, undesirable reactions from others leading to stigma for the psoriatic.  It helps me to think of others’ reactions and my stigma as a part of P that must be treated just like the lesions and aching joints.  It sounds contrived, but it works for me to think that how I react to the undesirable reactions of others is in the same category as spreading on my goops or taking my pills to combat my P; that is, it is something I must do to control my P and stay as healthy as possible. 

Now, granted, it may be a little belittling to strangers to admit I think of them as “lesions” and my response to them as “applying goop.”  Hmmm.  Just don’t take that too literally.  Okay?

(How would the social equivalent of “gooping a reactive stranger as though he were a lesion” actually come off? ...

Stranger:  Whew, Mister!  You look awful.  Is it contagious?

Dewke:  It’s psoriasis.  It’s not contagious.  Now shut up and go away.)

No.  I don’t actually carry through the simile.  Let me restate it.  I love my skin, perfect or corrupt, and try to take care of it.  I love people, too, the rude ones as well as the perfectly supportive ones.  I have to goop my lesions when they are bad, even though I understand the action is palliative and not really a cure.  When people are rude I have to do my best to change their minds and their behavior towards me, and that may be palliative, too. 

The best “goop” to use on other people is information and, of course, you are already doing what all of us must do: tell them what it is and that it isn’t contagious.  But one other step I’ve often recommended is to carry some NPF literature with you.  You don’t have to whip it out at the slightest provocation; but used with discretion — when it matters that others really understand; for example, if they’re inciting to have you and your children removed from the beach — it can be very effective.  The particular piece of literature I think is most effective is NPF’s booklet titled “A Guide to Understanding Psoriasis.”  I have highlighted these sentences from page 2 of my 1999 version of the Guide:

Psoriasis is a chronic skin disorder that is believed to be related to the immune system, though the cause is still unknown.  It is not contagious: a person cannot “catch” psoriasis from another person.

(If you are a member of the National Psoriasis Foundation, you may be able to download a copy of this brochure at their web site:  http://www.psoriasis.org.  I’ve had difficulty downloading these large files — which may just be due to my Internet service or congestion on the Internet.  The files are in “pdf” format, which requires Adobe Acrobat reader on your computer to open.  A link to the site where you can download this free software is available at the NPF site.)

Since you’ve already demonstrated more courage than I have, Ellie, it seems particularly inappropriate for me to be giving you advice.  I haven’t even owned a bathing suit for over a decade!  Hopefully other FlakeHQ readers will come to the rescue and share with you their beach experiences.  (If you haven’t read Roger D.’s correspondence in the archives, you might find it inspiring.  Roger is a nudist.  Just think about that for a minute!  Search on “Roger D.” — with quotes — on the FlakeHQ home page.  Click “Search” on the navigation bar at the top of this page.)

Do stay in touch Ellie.  -Ed

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