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Chronically Ill, Chronically Insecure?: The Tie between Battling Chronic Illness and Battling a Bad Body Image

Casey Cromwell

    “I wish I had celiac disease so I could be skinny like you.”
    As I stared into my dorm room mirror, Lily’s words echoed in my mind. Our dinner provided me all the material needed to be a killer comedian. I could picture it easily: me standing on a lighted stage, microphone in hand, setting the scene: “One newly diagnosed celiac and a handful of fellow freshmen enter the Caf. They load their plates, pick a table, and start small talk.” Then, the punch line: “Lily, the gorgeous blonde, would rather be me, the 5'3, 88 lb celiac.” Like most people, Lily doesn’t know that the struggle to love a “broken” body is no laughing matter.
    That night, as my fork screeched against my salad plate, I imagined stabbing more than wilted lettuce. I imagined saying, “I wish ingesting gluten wouldn’t kill me.” Or sharing that my knees often buckled walking to class; my stomach randomly bloated and ached; and, no matter how much I ate, I never felt energized. But it was only our first week, so I didn’t. Instead, I forced a chuckle and replied, “I’d trade you ten pounds for a slice of that pepperoni pizza.”
    The discussion trailed off at our table, but Lily’s comment dominated my thoughts long after we ate. According to “The Body Project,” those with chronic illnesses often see their bodies as “personal failures” to society’s fit and beautiful ideal. I proved it that night–and many nights after. As I undressed for bed, I searched the mirror for the body Lily envied. I failed. I only saw my underweight self: bony, bruised from my lack of padding, and – spiritually and functionally – broken.
    I lasted two months as a zombified freshman before I – all 83 pounds of me – landed in Balboa Naval Hospital. For three days, I tolerated an IV chaining me to a hospital bed. I survived a feeding tube forced through my nose and down my throat. Then, Dr. Mantalto patted my knee and said, “You’re malnourished and vitamin deficient. The NG tube needs to stay.”
    “Until I go to back to school?” I resisted touching my right nostril, raw and bloody around the plastic tube.
    He shook his head. “Until you heal.”
    I didn’t bother hiding the tears. “I’m already the skinny freak on campus!” I yelled to my parents. “Now I’ll be the freak with a tube in my nose and a nutrient pump in my backpack? I’m sick of being sick!”
    More importantly, I was sick of pretending I wasn’t one of the 117 million chronically ill Americans. So I stopped. I posted an NG-tube selfie on Facebook. I wrote a blog post titled “Hospital: Heaven and Hell,” and, after a popular celiac blogger shared it, watched as comments appeared from all over the world. No more hiding. I was viral. We – the chronic illness community – were viral.
    My friend, Elizabeth, never had the option of concealing her cerebral palsy–her walker and two large surgical scars make her illness obvious. Yet, she rarely wishes for camouflage. “When I’m asked about my CP, instead of shying away from it, I give them the facts,” she explained. “It’s amazing the respect that comes back now that I accepted myself.”
    I learned a similar lesson reading the blog comments. Some suggested I bedazzle my NG tube or follow Dad’s advice to dye my hair pink; however, one comment stuck out. “Celebrate your struggles,” it read, “They awaken you to what matters most.”
    Two weeks later, I walked back on campus five pounds heavier, one NG tube (blessedly) lighter, and with a new idea of what mattered. I wouldn’t berate my body for “failing” me; instead, I’d celebrate every baby step.
    Yet, I didn’t fully embrace my dysfunctional body until late sophomore year, lying in bed with Nick on a lazy Saturday night. Silence fills the dorm room except for the fan’s rotating clicks and the rustle of heads on pillows–until we decide to play Twenty Questions. He speaks first.
    “What’s one thing you don’t like about your body?”
    No hesitation. “My stomach.”
    Nick turns his head towards mine, fingers tracing the hem of my t-shirt. “Why’s that? You know you can tell me.”
    A laugh sticks in my throat. Eight months of dating already revealed worse secrets. Yet, my cheeks burn red as I mumble, “Celiac disease. Bloating. Gluten-hating. Hurting. The whole shebang.”
    It’s his turn to hesitate. “Your celiac has never bothered me. It’s part of Casey. And I like Casey.”
    “I do too.” For one of the first times, I realize, I mean all of me. Celiac disease took away fifteen pounds, dietary freedom and a “normal” body – but it gave me strength. Thanks to celiac, I know how to advocate for my health. I appreciate how hard the human body fights to thrive. And my comedy routine? Sharing how Nick must brush his teeth before kissing me always gets people laughing!
    When I asked my mom what life with fibromyalgia has taught her, her answer was simple. “As I’ve gotten older, I finally have come to terms with the knowledge that I’m just not ‘normal,’” she said. “I try to count my blessings and concentrate on what I can do.”
    What can I do? What can any of the millions of chronically ill Americans do? We can’t totally “heal” our broken bodies. We can, however, heal our spirits by realizing that loving a body with chronic illness is worth the struggle.

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