What is your body image?
Are you active on social media? Do you watch TV or movies? Every day we’re surrounded by images that represent society’s perception of beauty and attractiveness—even though most images portray unrealistic, unattainable body types. This disconnect can challenge the ability to maintain a positive self-esteem and favorable body image. For people within the rare disease community, this disparity is often even greater.
It can be tough not to compare yourself to your peers, especially when you’re in middle school or high school—and even more so during swimsuit season. Being invited to pool parties while knowing you don’t even come close to looking like your peers in a swimsuit is daunting. For me, my rare disease wasn’t a huge deal to accept until boy/girl parties began. I was diagnosed at the age of four with mucopolysaccharidosis type VI (MPS VI), a rare disease caused by mutations in the ARSB gene that result in molecule buildup inside the lysosomes. The buildup causes tissues and organs to enlarge, and it can cause skeletal abnormalities. Becoming a teenager was when my confidence in my body image began to lessen.
For me, MPS VI left me much shorter than my peers. This meant that I had to buy clothes (including swimsuits) in the little girls’ section of stores, but I never let it stop me from attending parties or dances. However, I remember always keeping myself guarded for possible negative comments. I recall one time I was asked to dance, and I automatically thought the boy had been told to ask me because he felt sorry for me. I have never wanted pity, so I was quick to assume that I was being pitied. (Probably from watching too many “She’s All That” type movies at the time). It didn’t help that he was one of the popular boys in our class. I even asked him, “Who told you to ask me?” He responded, “No one.” I didn’t believe him, so in the end we didn’t dance. Part of me was also not sure how I’d dance with him due to him being much, much taller than I was. But a lot of it stemmed from me not having the confidence that a boy would want to dance with me or be associated with me. Since then, I’ve regretted the perception I held of myself at that time. It was certainly a learning moment in my life.