Self-Image (And Health Image) In A Time Of Crohn’s Disease

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This is not going to be a blog on how I managed to overcome my insecurities about my own body image and Crohn’s disease and managed to radically love myself, wonky health and flaws and all. I have had a distorted idea of health and self-image for a long time. I have a lot of progress still to make, but I am proud of how far I have come.

Like most women, or perhaps most people in general, I have a complicated relationship with my own health and body image. This relationship is made more complex by my disability and chronic illness. Crohn’s disease, for those of you who don’t know, is a digestive autoimmune disease that affects the entire digestive system, as your body detects it as a threat and attacks it. This causes a whole host of symptoms, from nausea, fatigue, and anemia, to ― there’s no avoiding it ― frequent and painful runs to the bathroom with diarrhea. It can be an embarrassing and stigmatized disease due to the digestive symptoms involved, but it has increased my love, skill, tolerance, and passion for bathroom-related jokes.

For many, Crohn’s conjures up the images of skinniness, as malnutrition from these digestive problems can lead to rapid weight loss. My Crohn’s developed at the tender age of 15, a time when teenage girls are already dealing with the pressures of living up to society’s standards of health and beauty. At that time, I rapidly lost about 20 percent of my body weight, along with some of my hair. Now I cannot look back on pictures of myself at that weight without extreme pain at how sick and skinny I was. But at that time, I was still intensely critical of my own body image. I didn’t see the skinny face and malnourished body. I saw a belly that still wasn’t flat and legs that were still too chubby for my liking. Prior to the Crohn’s, I had been at the top range of a still “healthy weight,” but that wasn’t good enough for me. Even in the midst of extreme illness, I only saw the flaws I wanted to erase.

My relationship with Crohn’s and body image only got worse after I started to go into remission on biologic medication. Crohn’s patients who go into remission often (thankfully) gain back the weight they lost. As did I... plus some. At the time, both the doctors and I did not realize that these medications cause weight gain that is almost impossible to control. As I started to pack on a little bit more weight, I developed a disordered mindset, exercising two hours a day and strictly controlling my calories, frustrated and angry as the number on the scale refused to budge. My doctor, happy that I was in remission, showed no concern about the extra weight.

Over the years, I worked on improving my mindset and relationship with food, exercise, and medicine. I managed to break my obsessive calorie counting after one too many salads or “healthy” raw fruits and vegetables that I thought I needed to eat gave me an intestinal obstruction and put me in the hospital. My relationship with exercise moved from excruciating, forced workouts that hurt my joints to what I could manage based on my health circumstances at the time, circumstances that fluctuated based on what I was experiencing from Crohn’s or the complications that the disease presented.

What I have had to come to accept most fully is the fact that the concept of “health” for me is drastically different than it is for others, and that has to be okay. For example, eating raw fruits and vegetables can and has put me in the hospital. For a Crohnie, this type of fiber is difficult to digest and can cause extremely painful and serious bowel obstructions. For you, an apple a day keeps the doctor away. For me, an apple a day sends the ambulance my way.

Instead of focusing on the ideal of health, I’ve learned to adapt to my own health standards: making nutritious meals that work with my digestive system, finding unique ways to cook fresh produce that will allow me to enjoy meals that won’t hurt me, doing exercises and hobbies that don’t put my body in pain, and finding the joys of cooking and baking again without obsessing over calories and servings of vegetables per day (in moderation, of course).

I have been ruminating on my relationship with my body and how far I have come specifically because my recent loss of remission in July this year has changed my health and body image dynamic yet again. A brief but rapid weight loss resulted before I was put on a Crohnie’s least favorite drug: prednisone. Prednisone is known for its unpleasant side effects: horribly intense cravings, rapid weight gain, significant facial swelling (also known as moon face), corticosteroid-induced rosacea, hot-flash flares, and mood swings. While I have been spared the rapid weight gain due to my rapid remission loss, I have been struggling with watching my facial structure change from the intense swelling, and I spend days and nights in front of the fan, face aflame and purple with rosacea. With all the intense Crohn’s symptoms, this may not seem like a big deal, but watching your own face change and blow up, and a temporary double chin develop, while your body struggles can be a hit to the self esteem. I wish I could say that the change doesn’t bother me, but many days it does. However, I have come to accept that these changes are not in my control, and that is okay.

It isn’t my fault that the prednisone is causing moon face, and there’s really nothing I can do about it. It isn’t my fault that the medications I need to keep me healthy take my weight out of my control. It’s okay that I don’t have the energy to go to the gym, and that I find lighter ways to still push myself to exercise when I’m sick, like walking my dogs, playing ping pong, or swimming. It’s okay that I may never have that flat belly because the abdominal pain from Crohn’s makes the prospect of abdominal workouts a low priority on my list. It’s okay that my relationship with food is about what’s healthiest for me, which isn’t the same as what’s healthy for the “typical American.”

My mindset on body image, health, and Crohn’s disease has a lot of room for improvement, but I am proud of how far I have come. No longer do I blame my inability to fit the model standard of health, or a dress size eight, on my own perceived shortcomings. I can accept that so many of these factors are beyond my control. And while I may not always be happy with my temporary prednisone chipmunk cheeks, or my not-so-temporary belly, or any other part of me that makes me feel insecure when I look in the mirror, I am proud of the fact that I am doing my best to achieve and accept my own picture of health and body image.

My dad and I during a recent tour of the White House, my red prednisone chipmunk cheeks and all!
My dad and I during a recent tour of the White House, my red prednisone chipmunk cheeks and all!

If you're struggling with an eating disorder, call the National Eating Disorder Association hotline at 1-800-931-2237.