Body Dissatisfaction and the Chronic Illness Behcet's Disease

Body dissatisfaction is a part of Behcet's disease for me, and it's easier to talk about Behcet's disease than my body dissatisfaction and disordered eating. 

I was born with a chronic illness called Behcet's disease. For me, it comes with a variety of symptoms that include ulceration throughout my digestive tract, joint dislocation, migraines, and skin lesions. But chronic disease comes with mental symptoms, too.

And while I have described my physical symptoms so many times my explanation has become scripted, I'm only this year developing a vocabulary to describe my mental symptoms. My Behcet's has contributed to a cycle of body dissatisfaction, disordered eating, depression, and trauma.

These symptoms, for me, are nearly impossible to discuss. I feel embarrassed. I fear they won't be considered "real." And the shame and secrecy that I've harbored surrounding these symptoms have left me isolated and my loved ones confused.

Body Dissatisfaction and Chronic Illness

Though my Behcet's has given rise to multiple mental health challenges, I'm going to focus on my body dissatisfaction because this is the symptom I find most difficult to talk about.

It's easy for me to complain about my gastrointestinal (GI) symptoms -- the ulceration and the subsequent bleeding and pain are tangible. Most people understand why these symptoms are so difficult to live with. Also easy to understand are my complaints about mealtimes -- food gives rise to these same symptoms and so I have developed disordered eating patterns. Specifically, I fear food and undereat, then get so hungry I binge.

As you can imagine, I've been pretty skinny because of this my whole life. But I've realized that this is no longer sustainable. And I've been working with my GI doctor and dietitian to find solutions. What I never expected was that it would be a struggle to watch my body change. I always said I hated my disordered eating and that I wanted to look strong and healthy. So, why do I feel panic as the numbers on the scale rise? Why do the softening edges of my thighs make me cringe?

Body Dissatisfaction, Secrecy, and Opening Up

It was this discordancy -- my constant complaints that I was small and weak, and my unexpected discomfort with my weight gain -- that led me to bottle up. How could I explain my body dissatisfaction to my boyfriend, after complaining about being too skinny for a lifetime?

I pretended I was fine and happy with my new body. Meanwhile, my discomfort with my body continued to mount, and my eating habits became erratic again. I'm still searching for ways to share my struggle. But the most useful strategy I've found is perhaps the most obvious: I explain my confusion. I lay out the reasons my body dissatisfaction has been so jarring and surprising. I explain that my feelings change from moment to moment and that this has been confusing. While not every loved one understands, I've found that most of them try to.