Our patients’ stories: Bullying due to a medical condition

On September 21-22 The U.S. Department of Education will host the second annual Federal Partners in Bullying Prevention Summit in Washington, D.C. This year’s goals are to engage government and nongovernmental partners to help identify the best ways to reduce bullying. In the following post, a Children’s patient discusses how she was bullied because of her medical condition and shares how her parents and medical team helped her deal with the situation.

By Kelly Rock

Kelly and her twin sister Megan

Growing up with an identical twin, you can expect a lot of comparisons to your sibling. But for my identical twin sister Megan and I the experience was slightly different. Instead of always hearing, “you guys look so alike,” we heard plenty of comments like, “why doesn’t Kelly look more like Megan?”

I was born with a rare facial deformity called Hypertelorbitism, which basically means I was born with my eyes being far apart and a nose that developed differently. Being born with Hypertelorbatism presented me with a good deal of challenges growing up. At 19 I’ve already undergone 8 surgeries at Children’s Hospital Boston and am scheduled for another one soon. At times I feel like I grew up in the operating room, and there were plenty of times where I wished I could’ve been outside playing with my friends instead of being in a hospital bed attached to IV’s, wires, and drinking all kinds of nasty tasting medicines to ward off infection. But through it all I knew that all the medical attention was best for me. I also knew that my plastic surgeon, John B. Mulliken, MD, director of Children’s of Craniofacial Anomalies Program, would do everything in his power to make me look my very best, even if that meant spending fourteen hours on one surgery. (I underwent that one when I was just 9 years old.)

Growing up, my family and medical team at Children’s were always very supportive in helping me overcome the challenges of Hypertelorbitism, but I can’t say the same about other kids my age. I used to be made fun of on a daily basis because of how I looked. I remember going to camp and having kids laugh and exclude me, or try to make me feel alienated just because I looked different. To this day I vividly remember a day in third grade, when I tried to play hopscotch with some of my classmates but they just turned their backs to and said I couldn’t play.

Kelly as a toddler

Their cruelty hurt, but personally I never thought too much about my condition. It never occurred to me to feel sorry for myself, or question why I had been born with Hypertelorbatism instead of my sister or someone else. More than anything I questioned why people would bully someone because of how they looked, especially when they had no control over it?

At times it was a lot to deal with for a young kid, and looking back I can say for sure that I wouldn’t have been so strong if it weren’t for my family. They always had great advice and were always there to support me through anything that came my way.

Dealing with bullies was hard, but even if I could, I wouldn’t change anything about my childhood.

Kelly as a teenager

Growing up with Hypertelorbatism, and all the life lessons associated with it, has made me a stronger person. Without those experiences I wouldn’t be who I am today, a sophomore in college with a steady job. I am a normal teenage girl who likes to go shopping, drive everywhere and hang out with friends every possible chance I get. I know it sounds cliché, but my life thus far has really made me realize that who a person is on the inside matters far more than their appearance.

Funny thing is, I’ve known this since I was very young, but some people go their entire lives without ever realizing it and make others feel bad in the process. To me, that’s the real deformity.

Kelly’s strength and positive world-view is a great example of the protective influences family, friends and other adults can have in the lives of bullying victims. In response to her blog, Peter Raffalli, MD, FAAP, director of Children’s BACPAC (Bullying and Cyberbullying Prevention and Advocacy Collaborative) wrote a companion blog that looks at Kelly’s story from a doctor’s perspective and offers advice to parents on how to help their children if they are experiencing problems with bullying.