Ever had one of those days when you look in the mirror, stare at your body, and hate what you see? Me too. In fact, that’s been my experience for most of my 29 years of life.
Usually when you talk to people about these feelings, they try to encourage you, tell you you’re being too critical of yourself, that you look great the way you are. Or they say they’ve been there—that everyone knows what it’s like wanting to lose a few pounds, that it’ll take some work, but you can get there.
My story is a bit different. When I was 18, I was diagnosed with Crohn’s disease. Though I’d been having severe symptoms for four months, there had been warning signs for years that my pediatrician had overlooked. I hated going to the doctor because I knew I’d be scolded after stepping off the scale. She’d note my weight, then hold a book in front of me and shake her head, pointing to a curved line averaging projected weight based on age and height. “Forget below the line,” she’d say, “you’re not even on the page.”
Thus began my experience with body dysmorphia. Whenever my weight came up as a topic of conversation, there was little encouragement and lots of criticism. Some words I heard from family members and friends: “You’re like the size of my one leg.” “I can see your hip bones sticking out under your clothes.” “That’s all you’re eating?” “I don’t know how you don’t die.” And the ever popular, “You’re so lucky you can eat whatever you want and not gain weight.” Funny, I didn’t feel so lucky shopping in kids’ clothing stores well into high school, buying pants in double-zeros, then having a tailor take them in. Or when rumors went around school and online that I was bulimic. And especially not when public figures started promoting “positive body-image campaigns” flaunting their curves and claiming zero wasn’t a size.
Once in middle school I was performing in a talent show with friends. We had choreographed a dance to a Britney Spears song and wanted matching outfits, so our moms took us to the mall. We spent hours going from store to store, leaving empty-handed because nothing in the stores fit me without falling off. Frustrated, one of my friends turned to me and said, “You need to get some meat on your bones.” I can still hear it like it was yesterday.
The message? It was my fault. I wasn’t normal. I didn’t understand: I ate when I was hungry; I stopped when I was full. But apparently I was doing something wrong. Once I was diagnosed, there was less blame, but not much less criticism. People kept a watchful eye on my plate, told me what I should and shouldn’t eat—and when, touted so-called cures that would solve all my problems. Doctors gave me different rules than everyone else: snack whenever you can, eat late at night, have whatever you want if it means getting a meal in. So I did. When I made new friends in college and we went out to eat, I tried desperately to avoid using the bathroom in fear they’d think I was forcing myself to throw up. It was mentally exhausting, and created a lot of anxiety around food that I still struggle with.
It’s been a whirlwind learning to accept the body I have and trying to grow comfortable in my own skin. But just when I thought I finally had it down, things began to change. Upon diagnosis I was 86 pounds as a freshman in college. I never thought I’d weigh in at triple digits. Flash forward 11 years post-diagnosis and lots of trial and error with treatment—I step on the scale and it reads 145 pounds. Great news in some ways, hard to swallow in others. Nearly three decades into my life, everything I’ve ever been told about how to “fix” my body has become irrelevant. Instead of taking in my pants and wearing a belt to hold them up, I buy several sizes up and still struggle to button them. I have doctors telling me to watch my weight and learn to maintain. And I find myself once again crying into the mirror, losing it in dressing rooms, and hearing people telling me what to eat, when.
Here’s what I want people to understand about inflammatory bowel disease and body image—for people with Crohn’s disease and ulcerative colitis, this kind of drastic weight fluctuation from one end of the spectrum to the other all comes down to yet another loss of control over our bodies, another unknown, another thing keeping us from ever getting too comfortable. And that reinforces the anxiety tied to how we look, how we perceive ourselves, and the interactions we have with other people. For years I’ve wanted to gain weight so I’d never have to hear another person tell me I needed “to get some meat on my bones.” But now that I’ve found myself on the other side, I’m left with a body I don’t recognize, a wardrobe that doesn’t fit, and the fear I’ll develop the bad habits people always thought I had to keep the scale from reading above 150.
I’m learning this is a journey with no end, but plenty of storage bins filled with clothes in varying sizes; a journey with no perfect pictures, but mirrors reflecting all kinds of milestones and setbacks; and with some words that motivate and others that discourage; but also the power to surround myself with those who support me, and the opportunity to educate those who criticize. So instead of passing judgment, this Awareness Week I hope you’ll help me pass on these musings.
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