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Childhood Reminiscences
from Alison S.

While reading Daughter Evicted from Ramada Inn Pool (April/May 2002), a flood of memories (pun only slightly intended) came over me as I recalled my own experiences with psoriasis as a child. Like the girl in the letter, I have wonderful, supportive parents who have stuck up for me and encouraged me to be open and honest about my condition since it surfaced, literally, at age seven after a bad case of pneumonia.

I remember only two times where I've had a serious problem with someone understanding what was going on with my skin. The one that hurt the most was an experience similar to the young girl's. During swim class in grade school a swim teacher accused me of having scabies. I don't know how she kept her job, but she did, and she always looked at me in a resentful, disgusted way I will never forget. I was no more than 10 years old, and I remember thinking it was funny how an adult was the first person to give me a hard time about my psoriasis when the kids at school had all accepted my explanations of it being a "skin disorder that isn't contagious."

I'm now 24 years old, and, after six years of blissful remission, I'm experiencing one of the worst flare-ups of my life. For some reason my hands and feet are feeling the brunt of it this time, although I'd never had it on those places until a few years ago when they developed from small, pin-like spots to the large, painful (emotionally and physically) patches.

For the first time in years, people are staring, asking me what's on my hands, and making suggestions for treatment (almost worse than insults). To make matters worse, I realize that I may have damaged my skin and made this flare-up come on from over 10 years of using Temovate without understanding the consequences. My old dermatologist never explained exactly how bad those consequences could be to me or my parents. In fact, I switched this past year to a great dermatologist thanks to the fact that I was getting fed up with not being listened to as my P got worse and because my old dermatologist up and left the area without any notice or recommendations for a new derm. (And without transferring my medical records, even though he was my derm for more than 14 years!)

Now my new derm — a very understanding one who specializes in the treatment of psoriasis — is trying something I consider to be a scientific experiment. On one side of my body, I'm using the dreaded tar solution (ew), and on the other I'm starting Dovonex treatment. My new derm thinks that the first time I tried Dovonex two years ago didn't work because of my long history with Temovate, so I went Temovate-free for six months before we started trying this. Between the tar and the Dovonex, we're going to see what works best for long-term treatment. I feel like a test subject out of a science fiction novel, which I laugh at each time I think about it.

Another story of being hassled over my psoriasis: As I pulled large chunks of it out of my hair during my seventh-grade band class (I was bored, and it was bugging me), the girl behind me who had been picking on me for various other reasons that year made a comment about my huge flakes of dandruff and asked in a snotty way what disease I had. I replied simply, "Psoriasis." And then, I flicked the scale at her, and smugly turned around as she scrambled to brush it off her lap. She didn't bug me about it again.

And finally, I'm starting my student teaching in the fall as a junior high school English teacher.  I recently attended an orientation meeting where a principal talked to us about future interviews for teaching positions. He told us about what to expect and what to share with our prospective employers, and I started to worry about my visible psoriasis. After the meeting, I went up to him and asked him if I should share that right up front in case I get turned away for being unclean or diseased, which I know I'm not. He said I shouldn't worry about it because if they would turn me away for having psoriasis, then I wouldn't want to work there anyway. (He had a relative with psoriasis and understood my concerns.) I've felt better about my hand ever since, and in my observations this semester, I was more than comfortable to answer the question, "What is that on your hands?" whenever asked by a student. I wonder how other teachers have handled the questions from students and other staff members?

Thanks for being there for us, Ed! Our sense of humor is what keeps us from going crazy.  -Alison S.

*****

Ed’s Response:  Thank YOU, Alison, for your great stories!  Isn’t it odd how if we have a good attitude, tend to smile when others might frown, aren’t afraid to laugh at ourselves or others ... isn’t it odd how derms seem to think we’re the best possible candidates for experimentation? 

Well, maybe it’s not odd at all.  Who’d want to experiment on a screamer?  Or a whiner? (Sometimes I do make stupid observations.)

Sorry to hear about your flare-up.  They’re extra-tough to take when you’ve been experiencing a sustained remission.  I’ve long believed that is the worst thing about our disease — worse by far than the symptoms.  To know freedom from lesions, freedom from stigma, then to have that taken away ... over and over in a largely-unpredictable cycle ... that, truly, is the Hell of it.

But you are going to laugh your way through it, Alison.  Or, at least, we can be like circus clowns.  The face-paint makes us appear to be laughing which, evidently, is sufficient for the masses. 

Please drop a line and let us know how your first term as a Jr. High student teacher goes.  (Don’t be throwing flakes on the innocents.  Parents might not be able to afford the years of therapy such abuse might foment! <wink>)  -Ed

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