(April, 1999)

How Loved Ones Feel, and Danger of UV
from Colin J.

Ed: Just dropping a note to say that my wife and I enjoyed your site. My wife has been psoriatic since she was about 3 years old. We got a kick out of the "Don't Say This" page. We could both identify with a lot of things on that page. She handles the psoriasis beautifully. It's actually a little harder on me. I love her and it really pains me to see the way some people react to her. Your right about the kids. They're blatant as hell. It rolls right off her back. Or seems to. I think she's blessed that way. I think it would drive me nuts if it was me. I think I'd react more the way you do. I loved the plane story. That stupid sap deserved it.

My wife is about 90% affected. Her father only has it on his scalp and I think a little on the backs of his hands. I never knew about psoriasis before I met her. I've tried to learn a little. Your site was also helpful there. She wants to start UV treatments now. I'm a little reserved about it. I want to see her feel good about herself and her appearance, but I really do not like the possible side affects. I would hate to see her get a disease that could kill her just for the sake of looking better. I'm sorry if that sounds cruel. I love her too much to lose her over something that seems to me to petty. Ultimately it is her decision and I will respect that.

I'm sorry. Here you don't know me from Adam and I'm dumping my life story on you. I apologize. I also get the point that your page is meant to be a little upbeat. I guess I'm going on the downbeat. Sorry again.

Well, I guess I should go. Thank you for taking time to read this. If you would like to respond, please do. If not, that's fine, too. Keep up the good work. I would like to be kept informed of updates to Flake HQ. Thank you again for your time. -Colin J.


Ed's Response: You are quite welcome, Colin. I treasure my time reading e-mails at Flake HQ; it's quite opposite a burden.

Your comment about people's reaction to your wife's P being "harder on you" is a point well-made, and perhaps not made often enough. The blatant side of P is utterly personal and we talk about that all the time. We Ps often wallow in our feelings of victimization. It's true, lists of utterances like the "Don't Say This" list are something we point to like lashing scars on our backs. Yet, if we read deeply those statements that sting us, we hear them uttered by loved ones who are suffering our hurt in their own very personal and often confused ways. Perhaps the greatest compassion we can aspire to is the compassion that allows us to think about how our affliction hurts those who love us.

Hey flakers! Consider this. Take a minute when you're not stressed, not itching, and not thinking about treating your P, and try this thought experiment: Pretend you are NOT a flaker, but for some reason (romance, business, intellectual admiration—whatever) you have met a flaker with whom you would like to become close (romantically, occupationally, socially—whatever). Got the image in mind? Good. Now, think about how you would like to witness that individual dealing with their P. You are going to really have to wrap your mind around this exercise, because it's difficult for us to mentally divorce ourselves from actually being a flaker. You must try to forget you know what it's like; you must try to react to this imagined acquaintance as though you are unable to comprehend what it is like to have P. If you can attain this distance, just conjure some scenarios and gauge your emotional reaction: Is your new attraction self-conscious of his/her P? Embarrassed by it? Apologetic about it? Bitter and defeatist about it? Does he or she refuse to talk about and try to hide it? Pretend it's unimportant? Or, make a big deal out of it and try to enlist your sympathy and attention? Which attitude on the part of your pretend friend appeals to you the most? In which circumstance do you find yourself drawn CLOSER to this person ... and in which circumstance does his/her reaction seem to push you away? What might you learn from this thought experiment? You might just learn what the person is like whom you would most like to be!

Ed's personal thought experiment results: My model flaker ended up being someone who regarded his P as though it were a young sibling always hanging around. Sometimes he would just ignore his P, and though we were both aware that it was there, because he could successfully ignore it, I could, too. But, just like a younger brother or sister with whom you always seem to be stuck, sometimes they defy being ignored. In those cases, I witnessed this: It was like I was standing facing my flaker friend and a line was drawn in the dirt between us. I stood on one side and he and his younger brother, P, stood on the other side. P was throwing a tantrum and interrupting our conversation. So, what did my friend do? Since we could not carry on our conversation and shout loud enough to drown out P's tantrum, my friend stepped across the line and stood next to me on the other side. We both turned to look at P, who was now alone on the opposite side of the line. Our conversation turned to P and the tantrum P was throwing.

Ed (the non-flaker, to New Friend): My goodness, P's in a rage about something. What does he want?

New Friend (a flaker): That's a good question. Isn't the little s__t UGLY when he acts like this?

Ed: It must take a lot of energy to be in such a tizzy.

New Friend: I guess so. Do you think if we just stare at him long enough he'll get tired and shut up?

Eventually it occurred to me what was happening. My imaginary flaking acquaintance was empathizing with ME, a non-flaker. He was taking MY POINT OF VIEW about P; addressing it from MY SIDE of the line. And ... yes. I've concluded that IS the kind of flaker I would like to be. Not someone who impresses upon you the amount of suffering I endure, but someone who LIKE YOU is curious and seeks enough understanding to get around being sidetracked by this curiosity called flaking.

And—one more little confession here, Colin—my time spent "doing Flake HQ" is a safety vent, a release valve of sorts. I usually read my Flake e-mail between 5:00 and 6:30 in the morning. I try (with more or less success) to pen my responses to e-mail on the same morning I read them. On days when there is mail to read and respond to, I often won't think about my P again after 6:30. And, as long as I'm not thinking about it, the rest of my world seems to breathe easier, too. So, I owe you some thanks, Colin. Because of your e-mail, this Monday (March 15th) is going to be a little better than it might have been. In fact, it's going to be just dandy!

I need to conclude with a note about your wife's pending UV treatments. Under direct supervision by a reputable derm, this should be one of the safest treatments available. Unlike "tanning salons," derms dispense UV in very careful dosages. Research has revealed some pretty accurate statistics about the amount of exposure likely to cause skin cancer—and the duration of time across which that exposure accumulates. So ... Don't worry about it. It is important, however, that your wife closely monitor her delayed reactions to the treatment. Different skin types will react differently after UV treatments. Some of us will emerge from an over-exposure immediately "pink." Others may require several hours to turn pink. We will be long gone from the derm's office by then. If/when this happens, the derm needs to be notified. The derm may ask for the patient to return for an eyes-on exam. Any discomfort caused from exposure should be reported and probably indicates an over-exposure. UV treatments are not supposed to hurt or result in hurt. They're just supposed to be boring. -Ed

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