Inflammatory bowel disease has taken a lot from me besides my health. I lost my identity, my naive faith in American health care, trust in doctors, my dignity, and my self esteem. The girl who was too shy to change in front of her friends has become the woman who regularly drops her clothes in front of strangers without batting an eyelash. Not because I feel comfortable in my body or anything like that. It's just that after you use a bedpan in a roomful of strangers with nothing to cover you immediately after they've all seen your privates, you start to not care anymore.
After diagnosis, my body didn't belong to me. I remember stealing sharps that nurses would leave lying around my hospital room to use for later. Cutting, both my friend and my enemy, was the only control I had over a body that was no longer mine, but now belonged to a team of doctors who sometimes did not care how much pain I was in, or that I was a young girl who was terrified and mortified at her own body. When a particular doctor saw my cuts, she made me sign a form to commit myself to a psych ward, and told me that if I didn't, I would be forced to by law. That was when I lost any control over my body that I used to have- until I discovered I could refuse pain meds. So I did. Sometimes I would take them, sometimes I would moan through gritting teeth, my insides slithering and spasming inside me, and see how long the pain would last before I'd start to cry. No person who self-injures should have to be treated like I was. No one should be denied basic health care simply because they self injure. While I was in the psych ward with a severe flare, that doctor wouldn't even let me take the medications that my pain team prescribed for me. It was a traumatic experience, and I wish that that doctor understood that I was not trying to kill myself, but was trying to gain control over my body again.
This angered me. I'm still angry. Self injury rarely does anything for me anymore, and I'm mostly recovered with a few relapses here and there. I hated not having any say over my body. Sure, I can refuse meds that I believe will harm me, or take meds that will help me. I can choose to eat in certain ways. But I can't control flares. As much as I would love to run again, I only collapse in a heap from arthritic joints, and am usually unable to get out of bed for days after a run. My body sometimes poops itself against my will. I can't always control the tears when the pain is really bad.
Reclaiming my body started when, after that particular doctor made me commit myself for some cuts on my calf, nurses would watch me use the toilet. I would slam the door angrily in their faces. I would scream at them. They gave me no privacy whatsoever.
My humiliation was smothered with rage. Once, after spending twenty minutes on the toilet, bleeding out and wondering if it were possible my intestines would just fall out of my body, my nurse asked me what took so long. It took everything in me not to deck her. I was in severe pain, was being denied basic medical care because people who self injure do not deserve medical treatment, and I had some pretty intense rage from prednisone. She told me to take off my shirt, because she needed to see if I had been "cutting your back".
My back? Seriously? Firstly, why would I go for my back? That's awkward. People who self harm are more likely to go for their torso or limbs. Secondly, I was in the bathroom for twenty minutes, straight blood pouring out of me. You could smell it, thick, sweet, and dank in the air. Foul. I knew she read my medical charts and would know that just a week prior, I was told I was going to die.
So I stripped. Angrily. Sarcastically.
"You want to see my back? Let me show you my breasts. Make sure there's nothing I did there." I whipped off my shirt. My voice was low, trembling.
"You people give me no privacy. Here. Wanna see me naked, perv? Fine, you can see me naked!" I dropped my pants, and was naked. My skin hung lose off me, and I knew she could easily count my ribs and see just how sick I was.
She begged me to put my clothes back on, red faced. I smirked at her. Probably made another snide comment. I dressed again.
I'm still not sure that if it was my daughter in that situation I would high five her or just sigh that she has my temperament.
I'm out of the hospital now. I have been for two years and work very hard at keeping it that way. I am well aware that any day, my UC could flare up, and land me back in the hospital. I understand that nurses need to keep patients safe. However, they weren't keeping me safe in this instance. I was being left alone for up to six hours, in a room full of sharps, cords, and other dangers, when I was deemed a suicide risk. I took note that the nurses would not only leave me alone on my three day holds, but conveniently, only seemed to need to watch me when I was naked or in the bathroom. I could have killed myself many times over with how often they let me be alone, my doors shut, curtains drawn. This was not a matter of keeping me safe. If they were keeping me safe, no one would have had me in a room full of dangerous items for hours at a time, with not even a single peek in the door to see if I was okay. This was solely a matter of control, humiliation, and treating me as a subhuman. They made me feel uglier than I had ever felt. I felt like a monster, and was treated like one. I was nineteen years old, and had just graduated high school a year prior.
This is the body that will be poked and prodded until the day I die, and I hate that. In the last year I've gotten ten piercings and three tattoos, because dammit, if I'm going to be poked and prodded, I want some say in the ways I am poked and prodded. I want something beautiful left behind on my body, not a scar with a horrendous hospital story. I've cut and dyed my hair. I started becoming interested in makeup, and embraced my femininity.
This is the body that is sick, sometimes tries to kill itself, and can't properly absorb water. But this is my body. This is the one body I get. I nourish it the best I know how. I eat foods that I know won't harm me too badly. I drink as much as I can, but no matter how much I drink, I am always a little dehydrated. I rest. I have to treat my body right because I have learned that the medical community does not care about me or my body. I am nothing more than a number, a statistic. Sure, I've met a few good docs here and there. I have met some lovely nurses. But as a whole, my experiences have taught me that I am just another crazy self-harmer who makes up wild stories about rectal bleeding and severe abdominal pain. But I am not. I am a recovering person who takes pride in the way she looks, and tries to be kind to herself, and deals with a debilitating, chronic illness.
My self-esteem won't be perfect for a long time. That's okay. I know I'm tough. I know I have every right to question doctors and refuse certain medications because of the way they affect me. I am not shy to ask questions. I am not shy to question a doctor's judgement. This body belongs to me. I take charge of my own health. I may have to go through tests and procedures I don't want to, but I have every right to educate myself, empower myself, and find doctors who treat me with respect. So do you.
