I have Ulcerative Colitis, an autoimmune disease that I like to personify as a destructive, errant interior designer that lives inside my belly. Just when I think he is finally satisfied with the work he’s done in my large intestine, he decides that “No, eggshell wallpaper will never do! I think we go bold and switch to fuchsia.” So he rips down the lining that hugs my precious intestinal tunnels, leaving me with stomach pain and a bloody toilet bowl. You might be asking, “Sophie, can’t you just ask the doctor to fire the capricious designer?” A reasonable question, yes, but one that fails to consider the language barrier between my doctor and all the tiny people that work in my body. Because of this, we are forced to communicate through miniature chemical frisbees that I swallow every night before bed. These tend to calm him down for a while, but never for good.
I was diagnosed at 13, and I am now 17 and 3/4, so I have had approximately five years to come to terms with this life sentence. However, this year something changed, and the way I’ve been feeling recently, well, you’d think that the doctor had just broken the news to me this morning. Maybe you can attribute it to naivete and the fact that 13-year-old Sophie was much more concerned with skincare and getting her braces off than gut health, but I assumed that the whole chronic illness thing was just one more quirk. Ulcerative Colitis felt more like a patch to iron onto my Girl Scout sash than a deficiency. Something I could show off to friends to prove how special I was.
This year though, my senior year, I had an abrupt reality check. I was so used to living with the mindset that my well-being wasn’t truly in danger, that teenagers were invincible, but then I found myself reliving the same situation over and over and over: come out of remission, take mind-melting steroids, get better, only to come out of remission again, more steroids, and land back at “better.” I was forced to look at the severity of the whole situation. I’m sitting on a clock, and I can’t ignore the ticking anymore. My body can only take so many cycles until I have to trade out my organ for a stoma.
I only learned about stomas this year. They cut a hole in your belly and connect it to your intestines so that everything you’ve eaten that day spills out into a plastic bag taped onto your front like a kangaroo’s pouch. To some, this may seem like just another price to pay for a healthy body that works, but it unlocked a level of fear in me I thought was reserved for national tragedies and lost loved ones.
From a young age, I found that I have this visceral repulsion to our bodies’ inside parts leaking onto the outside. Veiny arms, cracking knuckles, the pink skin under our eyelids—all completely natural features of the human body, but for some reason, I can’t even look at my own left foot because of a long protruding vein that runs up it. When I found out that it was in my cards to eventually have my intestine poke out of my belly like an earthworm, the panic attacks started. I cried a lot—heavy, choking cries that made it hard to breathe and think. The fear started to control me. Fear only made worse after it was clear that the current medicine I was on wasn’t working anymore. The next step was to start infusions, which entail me going to a hospital and hooking up to an IV for an hour—every other month for the rest of my life. The idea that I was getting worse and not better and getting pushed one square backward on my wellness board game made me want to go into hibernation.
Body positivity used to be so easy for me. I was stick-thin, partly because my Ulcerative Colitis blocked the essential nutrients required for me to develop correctly, but feeling comfortable in my body was never an issue until then. “Stretch marks are tiger stripes” has never resonated with me because when I look at my legs, I don’t see womanly beauty; I see a sick girl on steroids blowing up like a balloon and then forcing herself to lose the weight until she gets sick again. It’s the superficial part of me that is scared of having one more thing to feel ugly for, and that thing being a bag of shit tacked onto my body.
I’m about to move out and start my journey of adulthood, something scary all on its own, made more terrifying by the weight of my tears and medical history. I’m scared of what is to come, and even more than that, I’m afraid of facing it alone. I often tell people that I am a person led by fear. It is what limits and often drives me to achievement. Is this something I’m proud of? No, not really, but understanding and writing about these limitations means allowing myself the grace to learn and mature. There is no pressure to alter my wiring; I’m just allowing myself the space to hurt and feel until I can make sense of it.
During this global pandemic, I have had ample time to sit and think, which at its worst helped catalyze my fear to irrational proportions, but at its best reminded me of the immense change that can come from articulating my fears. Observing my raw emotions on paper gives me the space to empathize with myself and start to heal.
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