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.


17 thoughts on “Our patients’ stories: Bullying due to a medical condition

  1. honey u look fine an may god bless u u will conquer all best wishes 2 u an ur fam the world can b very ugly but u r doing just fine

  2. Kelly you just stay the way you are hun you and your family seem to have a hold on everything, shame on the ones who have treated you badly cause if anything they are the ones who lose out hun. You are a beautiful young lady and don’t ever forget this. God Bless You N best of luck!!!!!!!!!!!!!!!!!!!!!!!!!

  3. I think you are beautiful Kelly, and such a strong and inspirational young lady. We need more precious children with hearts like yours in the world.

  4. one courageous young lady..best wishes for your future-you will succeed in whatever you do!!

  5. Sweetie you and your twin are both beautiful girls….Thank you for your wonderful story. I’m sure it will help alot of others dealing with bullies..God bless you and take care =]]

  6. God Bless you always. Be proud of yourself for who you are. You will go far in life with the additude you have. Always hold your head high so you wont miss when God winks at you. Shame on those who feel they have to make fun of others in order to feel better about themselves.

  7. I was born with a full facial cleft and deformed hands and feet. I can so identify with your story Kelly. I also faced much bullying and teasing and tried hard not to let t get to me. I am 48 now and still undergoing surgery now and again and still face rudeness by others. I am who I am- someone full of life and sees the beauty inside of all! Good luck and blessings to you… Holly

  8. Kelly, the world is full of superficial people. I am glad you are such a strong young lady and I was touched by your story. You have overcome not only a medical condition but you have also risen above the bullying to become a smart, beautiful young woman with a much clearer view on the world than many people ever develop. I applaud you and wish you the best in life 🙂

  9. Kelly, I can imagine this wasn’t easy to share, but I’m proud of you for doing it 🙂 Sincerely, Dan 🙂

  10. dont worry about what anyone else seiz,a bully is just a lowlife that cant find any good in themselves so they take it out on others.god made us all the way that we are ‘couse he loves us that way

  11. You are soooooooooo beautiful–inside and out. I hope your story will make people look at how they judge others. When people think of prejudice they think of it in a very narrow sense—like religion, ethnic background, color, sexual orientation but prejudice takes on many more things than that—facial features, body size, intellectual abilities, etc. How sad that they miss getting to know some truly amazing human beings………like YOU! 

  12. Living in your neighborhood, I only knew you as the cute little twins who used to draw with chalk on the driveway in the summertime. It is so nice to see that you both have grown into lovely young ladies.  Best of everything in the future!

  13. You are a brave young lady! Keep up your great attitude. You have a huge heart and that is who you really are. People are so cruel especially high school age. My sister is ten yrs older than myself and born in 1940 with a cleft palate. Her surgeries didn’t start still she was five and she had five attempts so could only make sounds. We lived in a small town in ME and she was lucky. She had a friend who was always with her even though she couldn’t speak. At 17 yrs old she was nasal but had all the speech therapies and braces. My parents had to travel 3 hrs. one way, 3 times a week. She has never let herself be bothered by it. We love Boston Hosp. MA eye & ear took care of my daughters cleft and Childrens’s watched a heart WPW cond. A year ago she had an ablation and is heart healthy now. You are terriffic and have my respect. Keep up your good pawsitive outlook.
    Jayne in Vermont

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