Eating Disorders and Marfan Syndrome

February is both Marfan Awareness Month and Eating Disorder Awareness Month. Marfan syndrome significantly affects how I view my body and plays a huge role in my eating disorder.  

I have spent my entire life trying to shrink myself. 

Since I was little, I’ve been acutely aware of the space I take up in this world. For as long as I can remember, people have commented on my height. From “Wow, how tall are you?” to “You should play basketball,” it seemed everyone had something to say. It was made abundantly clear to me that my physical form was being perceived. 

I am 6’1” and the tallest in my family. My height isn’t a result of chance. It is a result of Marfan syndrome, a rare connective tissue disorder. Marfan syndrome often causes people to be tall with long limbs and a slender build. This meant that on top of receiving comments about my height, I also received remarks about being “skinny.”

I hated that my height was a constant reminder of my medical condition. I couldn’t make myself shorter. But I could crouch in photos, stand in the back of a crowd, or round down my height on dating apps. 

When it came to my build, the story was more complex. Growing up, I was insecure about my body. Over time, being “skinny” became a part of my identity. As I consumed more media, I started to like this part of my identity. I needed this part of my identity. 

I couldn’t control my height, but I could control my weight to some degree. That control became addictive. My body became a project: something to fix, to mold into something acceptable. I felt like no other part of me fit the beauty standard. I was desperate to fit in and to be “desirable.” I didn’t have any romantic experiences growing up which I contributed to my height and looks. I thought that if I was as skinny as possible, I would finally find the companionship I was looking for. 

Having Marfan syndrome made me feel broken. I thought that if I could conform to society’s ideal in even one small way, then I wouldn’t feel quite so abnormal.

The idea of control continues to shape my eating disorder. I have felt so out of control for all my life. My physical and mental health have both been a constant battle. I always have to be on alert. While aortic dissection is a lot less likely since surgery, I am still at constant risk for retinal detachment and other complications. These risks feel beyond my control. My mental health has also been a huge struggle that often feels unmanageable. Regulating what I eat in order to influence my body makes me feel in control.

Even after 6 months of treatment, I am still significantly struggling with my eating disorders. It is driven by the factors previously explained, but my eating disorder also gives me sense of purpose when I feel lost. Depression has left me feeling empty and successfully manipulating what I eat brings me fulfillment. The irony is that being empty is one of the only things that makes me feel full.

My therapist in PHP made an important point: a person with alcohol use disorder can avoid alcohol but a person with an eating disorder cannot avoid eating. We need to eat to survive. This is part of what makes eating disorders so challenging. 

There are many complex factors that shape and maintain my eating disorder. It is about so much more than food. I was so ashamed for struggling with my body image as someone with Marfan syndrome. There is talk in the Marfan community about ways to gain weight, but no talk about eating disorders. I hope that by sharing my story I can bring awareness to the links between Marfan syndrome and eating disorders as well as to the wide variety of factors that influence eating disorders. 

If you are struggling, please know that you are not alone. As I have to remind myself: there is hope even when your brain tells you there isn’t ❤️