Friday, November 5, 2010

Skin. Deep.

Maybe the problem is that I’ve always had too my time and/or energy to think.

I got some scary news from my doctor the other day, and it got me to thinking.

Nothing life-threatening. Or even “now-threatening.” But something else is looming over me— something I used to write about often, as women do, because we’re asked to by the societies that impel us to internalize failure. What’s looming is the question of whether I could really love myself, my body, unconditionally. But I suppose I should back up and ask what begs the question…

At 7, I was “diagnosed” (and I use quotes to try to diminish how self conscious I am about using such a dramatic word) with psoriasis. The name of the condition itself makes me cringe, and having explained it to people for nearly two decades now still fills me with shame. First, because of what such a condition does to the body, in appearance and otherwise. Second, because it is largely regarded as a “cosmetic” condition, and nothing more. So despite my being questioned about my appearance often as a young person, I often felt like I was proclaiming to have, in the minds of others, something as important or life-altering as freckles. Although I was often treated as (and indeed labeled) a “leper” due to the appearance of my arms, legs, neck, and forehead by my peers and even elders, the professionals who were intended to provide support for the disease (yes, some even call it a disease!) shrugged off the condition as merely topical, and not “beneath the skin.” But I was in elementary school, and so for a child, you don’t really need to dig so deep to make an impression. Needless to say, it took me until my early twenties to realize the impact such a cosmetic disorder (I have never in my life heard of or met anyone my age who suffered from the same thing) could have. Aside from the appearance and infrequent physical pain (i.e. cracking, bleeding) that it caused, it was how I internalized the treatment I received from others that shaped how I loved (or didn’t love) myself.

Setting that aside for a moment, we can fast-forward to my late teens. Having “accepted” my situation and “rejected” others’ opinions of my physical appearance (and though still crippled by the fear of rejection), I unexpectedly found a doctor with a miracle drug called Infliximab, or Remicade, for short. Although he specialized in gastrointestinal disorders and treated patients with Chron’s and Colitis with the same drug, he found that other autoimmune disorders, like psoriasis, could be temporarily pacified by use of this drug. He promised, as no other ever had (and we’re talking everything from top-ranked dermatologists to holistic healers, here) that he would “eradicate my symptoms.” At 17, with a prom and senior photos pending, I naively placed my trust in him. I’ll even go so far to say that I remained willfully ignorant of the potential downsides of this drug. Finally, someone had made the leper an offer. How could I refuse? Until recently, I thought the story really would end there. He made good on his word, and for a mere $7000 a month (thanks, HMO), along with several hundred milligrams of intravenously infused TNF-alpha inhibitors, I was “cured.” I could finally see my body clearly. Clear. I could love it, finally.

So I continued, for seven years, to spend 2.5 hours every 6 weeks receiving my “treatment.” That’s what we called it. When I got a job after finishing my undergraduate degree, I continued to drive the 50 miles from Boston to ensure it was his offices that treated me, because they were so nice, and because I knew them. They hooked me up, they put on a movie. They had wi-fi. They even gave me lunch on occasion (provided by some man or woman in a suit shelling out Panera Bread like it was currency, strangely) and so I never gave my long term health a second thought. I didn’t even consider the possibility that Remicade might be making me sick, despite my knowing that it can make one prone to upper-respiratory infections on occasion.

I didn’t entertain the idea that I might be so tired for the past two years because we changed my schedule to be “treated” less frequently by simply “upping” my dosage when I seemed resistant to the prescribed amount. I never questioned why I didn’t receive the obligatory TB tests other than my first one, in 2003, or why I haven’t had an actual appointment with my doctor in more than three years. I never questioned any of this until I saw a new doctor, out of convenience’s sake, last week (I don’t have a car any longer, so taking a whole day off work to travel 100 miles round-trip by train was starting to seem daunting).

This new Dr. performed tests I’d never heard of. He asked why I hadn’t been recommended or referred to see a dermatologist in almost eight years. He raised his eyebrows and immediately voiced concerned when I named my current dosage: 800 mgs per 6-8 weeks. That, he said, is the maximum dosage he’d give to someone in their later or latest years—not to a young patient with decades of potential treatment to go. He was shocked to realize that the only “chart” sent over by my previous doctor read only one line “DiBella: treated March 2008.” That was all. He said we need to pull back. He said an appropriate dose for me was roughly half of what I’ve been receiving, and that a continued dose at my current level hugely increases my risk of Leukemia and Lymphoma down the road. He said these were required warnings by the FDA, and the company who manufactures Remicade itself. Why, then, had the word “lymphoma” never been uttered to me?

I should mention that there is good reason, in the case of some young patients, like those with Chron’s, to provide higher doses of a drug like this. Their pain, the damage to their GI tracts, and the short-term quality of their lives depends sometimes on this treatment. I at one time would have indubitably agreed with regards to my “cosmetic” condition, which only in hindsight I realize caused me such trauma. It’s a drug I’ll continue to use for now, but this issue is really only the springboard for so much else with which I’ve been confronted lately: I’ll have to stop at some point. If I get pregnant, ever, I’ll have to stop. If I get sick, I’ll have to stop. If I move to a remote place that doesn’t have access to professionals who can administer the drug, I’ll have to stop. I guess what I’m asking is, will I have to stop loving myself again? This question is raised for me, I’m sure, because I’m now performing a three-year sociological critique upon the status of the U.S. healthcare system and its treatment of women. I’m also participating in it. We live in a world that I’m beginning to believe makes us and keeps us sick.

Instead of cures, we’re given consolation. When I tried to research what I could about my now-increased risk of blood cancers, most of what I found was either sugar-coated by the drug companies themselves, hidden in the fine print of practitioners’ websites, or amplified by personal injury and medical malpractice attorneys encouraging me to get sick so I could sue. In the end, it was kind of laughable. In the end, I realized that, if it weren’t for the environment in which I’ve been inculcated for 24 years, and which pushed me to seek this “treatment” in the first place, my situation truly would be “cosmetic.” It is not the disorder, but rather my socialization as an untouchable that made this thing, which I have hated my whole life, and which made me love myself only conditionally, that created this.

But who is responsible for the socialization? Am I, because I can self-actualize? My elementary school peers, who sparked my self-consciousness? The drug companies who profit from our self-loathing? Our ancestors, who constructed it? Who? Name it, so I can look it in the face before I have to face the real me again—the me who will inevitably be revealed in ten, twenty, thirty years. Too soon.

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