Mail (November, 1998)

Confessions of a Non-Psoriatic
from Kim

Hello Ed. I reviewed your site again, which is actually bad since my employer is paying me $X an hour to basically surf the web and waste time.

After going through it again, I felt compelled to write you an email and express myself, because I need some help.

I have recently begun dating someone who is a psoriatic. I have known him for three years, and have been silently in love with him since he left town to live in Texas. What I didn't know until recently was that his moving to Texas and then back again triggered his psoriasis. We live in a very foggy climate near the coast and he believes now he needs to be in the sun so he can heal.

I am not a doctor, but he shows symptoms of plaque, guttate and etho-something, I don't remember the term exactly. He has been to specialists all over California, and none of them will confirm a psoriasis diagnosis. They say they are not exactly sure, but the type of psoriasis they think it is, (PRP I think they said, which I can't find anything about), that he DOESN'T want it to be THAT. What does that mean? These doctors are too preoccupied asking him about his sexual history and testing him for HIV than about actually listening to him.

All of this has happened in the year since he's been back, and before we ever became close. Now I was reading some of your emails and I was struck by the one mentioning his girlfriend "cooled" down after he told her of his condition. While I don't agree with her actions, I can understand them. We all have to accept a certain amount of ignorance from the people we encounter. I remember a few months back when I used to see his knuckles, how they were dry, cracked and bloody, and then I noticed his arm, and when I gently inquired, he would retreat and change the subject. This was also before we became close. He has slowly grown more comfortable, and one night, after cuddling and holding each other for awhile, he asked me if I'd like to see, and I asked please. He took off his shirt and I saw the extent of his condition. His entire back, arms and parts of his legs were red, with patches of dry skin and blood. It struck my heart, and I suddenly felt very close to him. I wasn't shocked or afraid, and I think he sensed that because he seemed to relax a little. I reached up and touched his shoulders and lightly stroked his back, and he later told me he was grateful for how accepting I was, and how he hadn't been touched in a long time.

His condition does not bother me, in fact, I admire him. He has a tremendous amount of strength. We have since been intimate and while I do my best to make him feel comfortable, I can't seem to avoid situations that cause him pain, like when he rests his head on my chest when we lay together, and then he gets up, seeing the trail he has left on my black sweater and I see the pain flash across his face. I don't know what to do. I reach up and kiss him, brush myself off to show him it just goes away and say, "Black was never my best color, and yet I insist on wearing it." He will always smile, but I can see how he carries his shame with him for the rest of the evening.

He's 22, and has only had this condition for a year. While he says he has come to terms with it, I think he has probably only buried his feelings, and I don't know what to do for him. I have begun research to find out everything I can about psoriasis, but I don't want to be the type of person who drops into someone's life, and suddenly starts shoving cures and treatments in his face thinking I can help him, like a friend who is convincing someone who has been blind all their life that they can get an operation to receive their sight and their life will be 'that much better,' not realizing that they are actually doing more harm than good because they are not in the blind person's shoes.

We are in a play together and he will not change near anyone, not because he is ashamed, he says, but because he doesn't want others to be afraid of him and think it is contagious.

His health hasn't been very good lately. He has no energy, he is constantly in pain, he gets bad headaches and cannot ever seem to keep warm. I don't know what to do. Is there any advice you can give me? Is there anyway I can make him feel more comfortable? Is there some way to keep him from getting hurt when he sees the trails he has left on my shoulder? Is there a way to keep him optimistic when the doctors continue to bounce him around the state? Is there a way to share with him the things I have discovered from my research, and the different treatments I have learned about without becoming the eager-beaver-do-gooder that I am afraid of forcing on him?

I want to do what's best, and perhaps this is a case where the best thing to do is to do nothing and leave him alone. I don't know what it's like and I know I can never fully understand what he is going through, which is why I am asking, please, if there is anything I should know, or any advice you could give me, I would greatly appreciate. Thank you, -Kim

*****

Ed's Response: Kim, thanks for asking the question(s). Though your lover may not perceive it, he is fortunate to have you—someone who not only cares, but cares about the nature of her caring! Our DON'T SAY THIS list elsewhere on this website is full of statements made by people who "care," but aren't very sensitive as to the WAY they care.

Your questions are most delicate. As varied as the symptoms of psoriasis are, even more varied are the ways psoriatics react to other people's reactions. I've corresponded with people who would give a limb to have you in their lives, and others who would consider you a real P.I.T.A. (Pain in the a--.) Weigh the rest of what I have to say very carefully, because I do not know your lover, or where he fits on this spectrum of psoriatic sensitivities.

I favor the "explicitly intended approach." I feel like trying to help you. I want to learn about psoriasis and share what I learn with you. Would you mind? Your lover might find such a direct inquiry refreshing (I would), or he might be confused and embarrassed about it. If he finds it refreshing, proceed as you are compelled to. Don't demand anything from him—that he necessarily DO anything about what you discover—just present your information. I am instantly turned off by people who ask me, "Ed, did you try that _____ that I told you about?" Fact is, if I did try it and it worked, I would volunteer that information without prompting. If I tried it and it didn't work, I'd probably hedge because I don't want to discourage the other person or make them feel like they wasted my time. If I have NOT tried it, it's awkward to say "No" and try to come up with an explanation why. "It was a damned stupid suggestion, Ted; and I knew it right away and let it go in one ear and out the other. Okay?"

If your lover is confused or embarrassed about it, table the subject. "We don't have to talk about it now. But if I still feel like this a month from now, can I ask you again?" I think the most insidious thing about psoriasis is the way it complicates our emotional lives. (In a very real way, FLAKE HQ is dedicated to addressing this issue.) Every sane human has a personality that is characterized both within and without. We are who WE think we are, but we are also who OTHERS think we are. Psoriasis becomes noise in the harmony between these two aspects of our egos. I am acutely aware that Ed Dewke is more than a flaker. I become distrustful of close relationships that seem centered upon my being a flaker (my relationship with my derm is an exception, as are the many friendships formed through correspondence here at FLAKE HQ). If you were my lover, I would become insecure in our relationship if I believed you regarded my psoriasis—even compassionately—too much. In fact, those closest to me—my family, especially—rarely mention it.

On the other hand, this is worth relating: When I was first diagnosed psoriatic, told this was something with which I would have to learn to live, I became deeply depressed. I retreated to "my cave," which, unfortunately, had a too-well-stocked liquor cabinet. It was my wife-at-the-time who took the initiative to learn about the disease, who discovered the National Psoriasis Foundation, ordered the literature, built a list of recommended derms in our area, and nagged me out of my stupor and into being proactive. For that caring and devotion I will be forever grateful.

So, Kim ... Tread lightly! With regard to your lover's other health issues, tell him I said don't confuse your derm with a GP. I lost a third of my body weight and came Lord-knows how close to more catastrophic problems before a casual encounter with a stranger tipped me that I might be diabetic. All the while, under my derm's care. I made the mistake of thinking regularly scheduled visits to the derm were replacements for regularly scheduled visits to a GP. A nearly fatal error! One more thing: If he's up for it, tell your lover to check in here. Sometimes simpaticos are the best medicine. -Ed

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