what i wrote before, but switched around a little. this is the piece i'm reading for class tomorrow:
Two weeks ago, I was diagnosed with Polycystic Ovary Syndrome, a disease involving my endocrine system; the system that secretes and regulates hormone levels in my body doesn’t work correctly. No one is really sure what causes the disease; there isn’t even an entirely unified definition of the disease itself. What is known isn’t exactly encouraging—PCOS affects 10% of the female population of childbearing age. It can lead to insulin resistance, type II diabetes, and an increased risk of heart disease and certain cancers. It can be extremely difficult for women with PCOS to conceive and carry a child. There is no cure for PCOS. There are treatments: hormones, insulin medications, androgen blockers. Gene therapy is worlds away, although technically possible. Research about PCOS still seems to be in the stages of discovering all the symptoms of the disease, not in curing it.
I’m still trying to piece it all together, gathering information from various sources into a larger picture of this disease that will determine so much of my future, now. I have to change my life to include this new facet, only, this disease isn’t satisfied being just a part of my life. It’s already pushing, tearing down walls and trying to take everything else over. It wants my whole attention. It’s calling everything into question. Changing my diet, my habits, and my lifestyle may not be enough—I may have to change my entire world to find enough space for it.
It’s coloring my view of my past. I’m questioning every decision I’ve made since puberty, making me wonder what I’ve done to end up this way. If I ignored the warning signs. If it’s my fault for being overweight, for not eating right, for not taking better care of myself. If, I suppose, I deserve this in some way. I know it’s unproductive. I know it’s not going to change anything. But no one said I was thinking this way because it was rational. And it’s not just wondering whether I’ve done something to bring this on myself. I’m starting to second-guess everything—whether I should have had settled down and had children young like so many of my friends, whether I’ve wasted the only childbearing years I’m ever likely to have.
I used to think I never wanted children. I swore for years that I’d done my duty, diapering, feeding, helping to raise four nephews and four nieces. My first nephew was born when I was seven. I was regularly babysitting by the time I was twelve years old. I was always responsible beyond my years, always taking care of the latest addition to the family. I liked children, I would tell everyone, but I wasn’t having any. I don’t know when that started to change; maybe a few years ago, around my mid-twenties. Maybe when my last niece was born, and fell asleep against my chest for the first time, when I suddenly understood that I would do anything in my power to protect and nurture this tiny bundle in my arms. All I know is that one day I moved from never-ever to someday, but not right now. Now was the wrong time, for a whole host of reasons. It still is. But now I’m starting to worry if I won’t have my someday, if maybe I won’t ever get to make that choice for myself. If it’s already been made for me. Suddenly, I have to consider the possibility that I may never have a child, with everything that implies. The possibility of being infertile fundamentally alters my perceptions of myself and the life I thought I’d have.
My future is suddenly uncertain. I no longer know how I’m going to manage graduate school, if I have to worry about my health. I may have to find a job instead, right away, in order to get adequate health care. I can’t make choices that leave me without coverage; even graduation this May brings the liability of losing my health coverage. I can’t be completely free anymore, can’t make decisions based completely on what I want. How can I move halfway across the country for graduate school when without proper health care I could end up with diabetes? Can this disease really shackle me so much that I will limit myself to only what I know is safe?
I’m angry. I’m angry that I have a disease for which there’s no real definition, no full consensus of symptoms. I’m angry that there’s no cure. No one can fix what’s wrong with me. I’m angry that there’s virtually no research, despite the fact that nearly 10% of women suffer from this condition. I’m especially angry because I know that if something affected 10% of all men, it would be a major health alert. Newspaper articles would be devoted to it. Now, I just get my very own awareness and support bracelet, a few websites, and a lot of conflicting information. And it makes me wonder why women’s diseases take so much longer to be recognized, diagnosed, and cured. If we all just get pushed to the side, hysterical and barren women.
Above all else right now, I’m tired. I’m tired of trying to be healthy, of eating right and exercising and never seeing results. I’m tired of watching my friends scarf down Wendy’s three times a week and never budge above a size four. Tired of feeling jealous of all the women walking downtown with baby carriages. I’m tired of worrying, tired of blaming myself. And I’m tired of people telling me how fine I’m going to be. The last thing I need right now is a healthy person telling me that I’m going to be fine. Trying to get me to look on the bright side, reminding me how much worse it could be. I know it could be worse. That doesn’t mean this isn’t, right this very minute, as bad as it’s gotten for me. And I’m tired of trying to find a bright side when I’m scared, when I’m still trying to come to terms with the idea that this disease is going to be a big part of my life. I’m sick, and it’s not going to change. I’ll find a way to live with it; I’ll figure out my new way of being in the world, but this will always hang over my head. Right now I’m mourning the life I had before. I’ll figure out the rest eventually.
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