Communications (December, 1997)

Suffering & Attitude - Follow-up
from Belinda

Dear Ed: I'm the 19 year old sister of Leslie Carver (archives: "Suffering & Attitude"). She sent me the email she sent you and said I should read your letters and maybe even mail you one myself. Let's see. My problem is that I don't really know what I'm doing. I've had psoriasis for almost 9 years. It's severe.

I'm attending a college to become a nurse and I can't believe how many problems I'm having at school because I have psoriasis. My teachers, even though they are nurses, have never experienced P and they seem to be scared of me. I have even heard from the dean of nursing about my P.

I know that many people are scared of me and I can handle that, but why can't even the medical profession understand? I've noticed that children and the elderly seem to handle my problem better than the rest of the world. With them, all I have to do is explain once or twice and they are ok with it.

A problem that I have with my family is that no one else in my family has P. I know they all love me and stuff but they can't understand "it." I have heard all of the sayings [in "Don't Say This"] from them. (Well, almost all of the sayings.)

I used to not want to talk about my P with anyone but now I seem to need it. My best friends all know about it and some of them even have it—but not like me. They have said that they don't understand how come their's is so good and mine looks so bad. Why can't the people in our society just learn that I'm the same as them?

When I was born I didn't have P and nobody seemed to care if I was a little weird, but now everything that I do is "because I have P and am ‘acting out'." I try so hard to make sure that people don't know about me until they become my friends and then sometimes they end up not talking to me again. I've worn long sleeves in the summer but that only made me worse and sad. I seem to be sad all the time and I don't know how to get rid of the sadness without pain to me. I've noticed that guys are afraid to date a girl with P because they think that if we were to get "involved" that they would get "it." Or, they only think what their friends will say or think about them. I just wish I could find a way to get over all this and find a nice guy. Thank you for listening to me. -Belinda

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Ed's Reply:

Hi Belinda... Thanks for dropping by Flake HQ. At the very least, now you know you're not alone! I've read your email very carefully and want to make sure I understand your issues. There seem to be two: One, you're a little weird in the first place and people unfairly attribute this to your psoriasis. (I can hear it now: "Don't mind Belinda's behavior, she's got psoriasis.") Your dang disease is getting credit where credit isn't due! Two, you are feeling "pushed away" by people who are afraid of your psoriasis.

Let me address number two, first (because it's easiest). If you want to accumulate more good days than bad days on your way to becoming 46 (like me) you're going to have to accept your psoriasis as a part of who you are. Psoriasis isn't a bad habit (though others don't necessarily know this). It's not something you can "switch off" by changing your behavior (though lots of snake oil sales folk will try to convince you otherwise). Physically, psoriasis is a hurdle you face every day. Everybody faces hurdles, psoriasis just happens to be more visible than others. Because psoriasis is visible, people react to it when they react to you. Unless you help them, some how, they're simply incapable of separating the rest of you from your psoriasis. They have no personal experience to guide them. (You mentioned you have some friends who also have psoriasis, but not as bad as you. Have you noticed sometimes those relationships can be the MOST strained? They know how irritating their little lesions are, then they see how much WORSE your lesions are, and they go "oh-my-gawd-poor-Belinda-how-can-she-STAND-it?" And if you act halfway decent despite your creeping crud, they get defensive because THEY want more sympathy for THEIR teensy little itchies and you're making it less justifiable! Sheeez!)

What I finally figured out was, I COULD help guide peoples' reaction to me-&-my-psoriasis, and it all had to do with communicating MY attitude about it. A good principle here is "seek first to understand, then to be understood." Seek first to understand whether the other person is "afraid" or "revolted" or "overly empathetic and therefore confused." People who are afraid just need information. "It's not contagious and doesn't prevent me and you from doing (whatever it is you're doing)." People who are revolted (backing off and insulting me through glances, gestures or words) may or may not be worth the effort, but I find blatancy is usually the best tactic: "Are you having a real problem with my skin condition (or the way I look)? Can I say or do anything to help you deal with it?" The overly empathetic or confused person—someone who's so distraught about my psoriasis we don't seem to be able to move on to other important things—I tend to deal with like this: "Listen, please don't feel more sorry for me than I feel sorry for myself ... and right now I'm feeling pretty good, so why don't we (go on about our business, or talk about other things, etc.)."

Now, I need to pause here and reconsider your situation at the nursing school. You WOULD THINK that supposed health care professionals could get a grip! Can it be that these people are really IGNORANT? Maybe you need to make photocopies of some of the general information brochures available from the National Psoriasis Foundation and give them to your teachers and the Dean—and fellow students, as appropriate. (You think YOU'RE weird, Belinda! Here's how Ed Dewke would have probably handled a meeting with your Dean: "Oh Dean, I'm so relieved to learn I'm here to talk to you about my psoriasis. I was afraid you might have learned about my psychotic episode awhile back that got me kicked out of [some other school]. I've got THAT problem totally under control—everyone agrees now it was simply a bad reaction to Prozac. Now, what did you want to say to me about my psoriasis?")

Dealing with loved ones is somewhat different, and that gets us into issue number 1, that you're a little weird in the first place and people tend to unfairly attribute this to your psoriasis. Are you REALLY a little weird, Belinda, or are you UNIQUE? "Weird" sounds like a label somebody else might slap on you. "Unique" connotes a better attitude about yourself. Before you can transcend your psoriasis in relationships with others, you've got to transcend it in your understanding of yourself. Of course, here at Flake HQ, psoriasis is THE SUBJECT. But one of the reasons I maintain this web site—and I hope one of the reasons people participate in it—is it allows us to focus on our disease in a hospitable and appropriate setting ... sort of "get it out of our systems." Psoriasis is "important to us" when we're together here at Flake HQ, and hopefully that helps make it a little less important elsewhere in our lives. And note what happens when we really DO get together like this and FOCUS on our psoriasis! We ALWAYS find something to laugh about.

With regard to finding the right guy, I'm the last person in the world to advise you (seeings as how I've been married three times and am still on the steep side of the learning curve). However, at the risk of overstepping my bounds, here, let me refer you to an exchange I had earlier this year with a fellow four years older than you. He was having "girl problems" for a similar reason. Click here to go to the Archives: Squeamish Girlfriend.

Stay in touch, Belinda. (I'm curious to know how things develop at school!) And welcome to our little colony of flakers! -Ed

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