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Happier Not Fighting P
from Courtney J.
Dear Ed: I am not normally inclined to write letters to strangers, but I have been reading through FlakeHQ and have never really spoken to anyone else who has psoriasis. I have been reading many of the letters, and though it is therapeutic, I still don't know exactly what to do about it.
I am 22 years old and a recent college graduate. I was diagnosed with psoriasis at about 18. It wasn't so bad at first, actually I hardly noticed it at all. Since then, it has been gradually spreading across my body. At first, I was consumed with a quest for knowledge. I wanted to figure out why I had this (my first two doctors did not even tell me it was a chronic condition). It was not some spiritual answer I was seeking, truly there are much worse afflictions in the world, but why was my body doing this? No one in my family has it (and I am one of eight children). Could there be something worse causing this? Did I do this to myself? Still, I have no real answers. Maybe there are none.
One doctor scolded me for reading and having questions. Does he really expect me to blindly follow him? Meanwhile he's telling me not to get the oily mess for my scalp on my face. I was supposed to sleep in the oily mess all night — and I would wake up with it in my eyes.
My most recent doctor had me using about 7 different topical prescriptions in addition to light therapy 3 times a week. I'll refer to this doctor as the Bitch. She didn't even believe me when I told her I was getting burned. Meanwhile, areas of my body sensitive to the light were having a negative reaction. She told me it was psoriasis covering my stomach and face but it was different than usual. I told her it was from the treatment but she didn't believe me. I eventually quit treatment and my face cleared up. When I complained about the light therapy she threatened me with oral medication claiming that was the only other option they had to help me. And I think, What do I have to gain from you? It seems the doctors hurt me more than they help me.
I have developed a mistrust of doctors and the treatments. I ask myself, Where am I going to be in ten years (32, still young) and where am I going to be in ten years if I use their drugs all of that time? I'll still have psoriasis either way. (I do not have flare-ups, by the way, my P is just always there.)
It seems like a useless battle. I am more stressed when trying to fight the unbeatable, and I have been happier since I have stayed away from the doctors. I know my disease-ridden appearance will probably have an adverse effect on other people. Very often I don't even try to cover it up. In the summer, I will walk around in shorts and a T-shirt. For some reason, selfishly, I have always been more concerned with how I feel than how I look. Sometimes I am amazed that people care more about how I look than how I feel.
I think the worst part about P is the itch. I have been told, though, that I look disease-ridden and that can be as bad as the itch. I must admit, I have no idea what I am doing, but I am happier right now not fighting and doing the best with it that I can on my own. Perhaps I am misguided in my beliefs about the adverse effects of the drugs. Perhaps I am selfish to not be using any method to hide this from the sensitive eyes of others. Or perhaps if I do not use the drugs, the psoriasis will have a negative effect on my health. Maybe I am stupid to not sacrifice anything to be 'normal,' I don't know. (I don't have health insurance now anyway. Crazy, but that seems like a relief.)
I must admit, I am writing this for my own therapy. I have been reading so many other views, and perhaps in the end it comes down to this: psoriasis is different for everyone, physically and emotionally. But then again, someone without psoriasis cannot truly understand. I thought maybe you might. I'm sorry to take up so much of your time. It's just that, well, you seemed so nice to all the others! Thanks! Courtney J.
Ed’s Response: You might have written this for your own therapy, but thanks for sharing it, Courtney, because it’s a moving expression that pretty well sums up where tens of thousands of us have been, are, or will be — emotionally and intellectually.
Derms are usually in a lose-lose situation with flakers — a predicament for which many seem ill-prepared. Their predicament is complicated by the fact that in our society we don’t pay our health care professionals for making us well, we pay them for attempting to. As embarrassing as it may seem from the outside looking in, these silly derms are in the unenviable position of having to ask for money, over and over, when so little they do actually helps us. As you pointed out, there are many incurable ailments worse than P and that, ironically, seems to exacerbate their ridiculous situation. We are able to accept major awful things — like cancer — as sometimes beyond medical cure (and we nonetheless pay exorbitant sums to oncologists to "see what can be done"). But here we flakers are with something NOT terminal, often not even debilitating, but something that’s terrible to look at and gets in the way of our social interactions, and the docs are helpless but eager to keep taking our money. Here are these Legends in Their Own Time who can fix really bad ailments ... but they can’t restore our skin. It grates on one’s sense of fair play. And, until we flakers learn about the nature of our disease, we see the derms who treat unsuccessfully, prescribe for us unsuccessfully, and stutter and stammer their excuses ... we see these over-educated white-frocked oath-bound goodie-goods as greedy and of questionable worth.
Is it any wonder most of us have seen multiple derms over the years (looking for the exception — one who can really help)?
Would you blame the derms for not really minding when we get fed up and move on to another doc?
And there is another problem dogging the derms. There is a progression in the complexity and complications of remedial therapies for P that may or may not parallel relative effectiveness. It’s troubling to consider starting a 22 year-old on a liver-threatening regimen and, many derms believe, not even a reasonable option. No doubt there are flakers among us who are unnoticeable because their few lesions are hidden beneath street clothing, but their desire to wear swimsuits on the beach a few days a year will have them begging for a systemic remedy without regard for the potential bad side effects. Good derms, like anyone with a conscience, would hesitate to endanger such patients with a regimen known to become toxic over time. On the other hand, can the derms afford such crises of conscience when presented with a truly debilitated flaker whose life might be radically improved by one of the dangerous systemic regimens?
I suspect, Courtney, that you will come to make your peace with derms and that may not mean you ever acquire a worshipful awe of them. (Please promise me you won't.) You may come to understand them as a fallible recourse available when the situation warrants — though perhaps unreasonably pricey. I’ve heard from many flakers who do not seek the counsel of derms for different reasons. But as you wrote in your last paragraph, "psoriasis is different for everyone, physically and emotionally" and that is the root of the problem. Perhaps you have not yet reached that stage in your flaking career where you will, with confidence, look a derm in the eyes and say "No, don’t go there, that doesn’t work for me." But, if a cure isn’t around the corner, you might get to this state. I’m there. Knowing what I know about my own P is something I can use to separate good docs from ones I will quickly abandon. When I say that to them, "No, don’t go there, that doesn’t work for me," the way they respond is the deciding factor. Those who come back with an argument — who for some vainglorious reason believe their administrating a regimen that hasn’t worked for me in the past will miraculously have different results! — don’t see me again. They are wanting to become fools with my money. Those that say "Okay. Let’s keep looking for something" might make it onto my Christmas card list.
The Bitch who administered your disastrous light therapy may need a little continuing education from the National Psoriasis Foundation. Do her a favor, drop her a line and tell her NPF has a course for healthcare providers on the proper administration of light therapy for psoriatics.
The doctor who scolded you for your own study of your condition was being worse than a fool with your money. He was being a health care high priest and needs to be reminded that it is the 21st century, knowledge is everywhere for those who look for it, and the only knowledge he may possess in secret is that handshake thingy from his fraternity days. Having said that, I would be the first to admit that the worst sort of patient is the one who has a dangerously small amount of knowledge. But the appropriate way to handle that, in my opinion, is to accept the fact that such patients respect knowledge, and provide more.
Stay in touch with us, Courtney. You will have adventures we will want to read about. -Ed