Editor’s note: This article was initially published in The Daily Gazette, Swarthmore’s online, daily newspaper founded in Fall 1996. As of Fall 2018, the DG has merged with The Phoenix. See the about page to read more about the DG.
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Don’t believe the adage: time doesn’t heal all things. It does, however, make everything more bearable. But, my embarrassment and confusion on the day I was diagnosed remain imprinted in my memory, like a strange pastiche of nightmares: In my underwear, in front of a crowd of doctors (everyone in the dermatology and rheumatology departments had been pulled in to observe my “unusual case”), I learned that I was incurably scarred, ugly, and different. For a nerdy and late-blooming 14-year-old, the knowledge was painful and the experience overwhelming.
I had developed morphea, a skin condition form of the autoimmune disease scleroderma. To dispense with the jargon, my body flipped out, attacked itself, and formed unnecessary scar tissue. As a result, I have lesions of discolored and hardened skin on my torso, my neck, an arm, and a leg. Morphea has no proven treatments. My rheumatologist predicted my lesions would fade within “five years or so,” but eight have come and gone with no sign of improvement.
There are no real side effects, unless my low reserve of energy is actually fatigue stemming from the morphea. Exercise tends to give me very painful stitches around my abdominal lesions. But I thank my lucky stars that I don’t have full-blown scleroderma, which has slow and painful complications and, often, a grim prognosis.
My relative good fortune doesn’t always assuage the nagging psychological discomfort my illness causes me though. My risk for scleroderma, though less than a measly 1 percent, is elevated compared to the general population (fewer than 1 in a million Americans have any form of the disease). I’ve mostly quieted that nagging fear, that highly specific hypochondria, that suggests that every symptom is a sign of impending kidney and lung failure..
Time has passed, and I’ve adjusted. I wouldn’t call my experience a struggle so much as a long, slow test of patience. I have moments when I feel overwhelmed by rage at the injustice of my illness, by self-loathing for my powerlessness to change it, and by shame for the cosmetic ugliness of large swaths of my body. I occasionally bemoan the peculiarity of my appearance in bikinis, and, half-jokingly, pledge myself to wetsuits forevermore. When I hold hands with a male friend, I sometimes can’t help but imagine that the strangers I pass assume the bruise-like marks on my arm were his doing.
When I was 14, the cosmetic effects at first inhibited me from participating in some activities and rites of passage. I quit my year-round competitive swim team for the drama club, only competing during the summer and never daring to wear a bikini until I was almost eighteen. My forays into romantic territory were uncommonly late and tentative.
But between ordinary maturing and adjusting to my symptoms, my self-consciousness abated. Obviously, most teenagers grapple with body image and self-acceptance to some degree, but my teenage mind interpreted “unusual” as “weird and alone.” I felt isolated by this struggle, rather than connected to my peers who probably felt the same as I did. It took years for me to realize that I did not have to explain or apologize for my body, and I’m still not certain that I’ve fully internalized that knowledge.
In my experience, the Swarthmore community adheres to a doctrine of body acceptance better than most places. I don’t get furtive glances or rude comments about my skin’s strange appearance. However, I often wonder whether Swat’s tacit acceptance is just a mechanism for suppressing difficult conversations. If you don’t know how to talk to someone about illness – physiological or psychological, past or current, in oneself or in one’s loved ones – it’s easier just to quietly avoid the topic. We can proclaim our willingness to accept differences until we’re blue in the face, but the lack of deeper conversations connotes that those differences are too shameful to talk about.
I can’t be certain why our social atmosphere makes discussion of sensitive topics so challenging. Intellectual pursuits dominate so much of our lives that they overshadow the physical realities of our existences. Many of us overbook our calendars and heap our to-do lists sky-high without prioritizing taking care of ourselves, or even really acknowledging that our bodies are more than just specialized carrying cases for our brains.
There are no easy solutions, as much as we may wish for them. Learning to prioritize self-care and cultivating an attitude of acceptance takes time. We can, however, encourage our friends to relax a little more, abstain from the dreaded Misery Poker as much as we can, and avoid trivializing our problems. We could all also listen a little more carefully. You never know when a friend may be desperately searching for someone to confide in. It usually isn’t easy to tell who may need help. I may have scars on the outside, but that doesn’t make me an exception: everyone has pain that they sometimes want to keep quiet.
By Allison McKinnon
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