Mar-Apr '08 | briefing | mail | interviews | articlespsorchat |  don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewkesearch | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic  | 2008 Ed Dewke

Passed Up Rare Opportunity Because of P
from EW

Hi Ed:  As so many of your writers, I have had psoriasis for 30 years.  I have been doing well emotionally (or so I thought) with a supportive spouse, great kids, and lots of long sleeves.  I just had an experience that brings back all the feelings of hopelessness and disappointment I have felt on occasion in the past.

My hobby and my passion is singing classical music in chorales and choirs.  I recently auditioned for a prestigious group and was accepted.  I was thrilled and the first rehearsal was great.  I was approached by the woman who works with the chorale dress attire.  Men wear tuxedos, but you guessed it, the women wear a dress without sleeves. I inquired about a long sleeve version, but that was not a possibility.  I withdrew from the group.

I am so tired of not participating in life fully.  There have been no trips to the beach with friends, I'm embarrassed to go to the gym, wearing long sleeves and long pants no matter what the weather, and now this chorale seems like the final straw.

After 30 years, when do I get a break?  I have a great medical plan, but Enbrel has never really cleared me and nothing ever works for long.  I'm depressed and feel alone.  -EW


Ed’s Response:  So sorry to hear about the chorale costume experience.  Please don't make it the final straw.  P will constantly throw barriers at us and we all face them one-by-one, sometimes climbing over them or around them, otherwise changing direction.  You made a decision, in this case, to change direction.  It won't be the final decision like this you have to make.  One way of looking at these "to do or not to do" decisions we flakers have to make is that they are exceptional decisions.  People with normal skin don't even have to pause at these crossroads.  They don't take a moment to look around and then appreciate moving forward.  One thing hard decisions do — like your decision to withdraw from the group — is deepen our appreciation of what others take for granted.  We keep fighting.  You will, too.  Between skirmishes you will take solace from that understanding family and the environment they have built for you that makes hard landings softer than they otherwise would be. 

One thing you can do is consciously collect ideas and build, at least in your head, a "database" of work-arounds for more of these hard decisions.  Maybe this is worth noting....

If you have a dance attire store in your city, you might consider calling upon them.  I once had a mother-in-law in that business.  They might know how to make those skin-tight and skin-like leotards, the kind of garb that can and has been used UNDER robes and other clothes (by stage performers and ice skaters as well as dancers) to cover otherwise exposed skin in an almost-unnoticeable way.  (If I remember correctly, there is one form of long-sleeved leotard that has a hook of material through which your thumb goes.  This prevents the sleeves from "riding up" and keeps the fabric snug.  Just a thought!)  -Ed

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