Friday, February 27, 2015

Now I See Only Me

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Sabrina Robineau. Come back all weekend for inspiring stories of people 
who individually may be rare, but are creating a strong community together. 

When I was a little girl, I would look in the mirror and stare at this ‘person’ in front of me. As I stood there, looking at my reflection, it always left me feeling confused. Who was this girl? Why did she look so different from her family and her friends?  From a very young age, I constantly questioned: Why me? Why was I born with this syndrome? Why couldn’t I have looked like my mom? who I thought was incredibly beautiful.

It is tough growing up with a rare syndrome. Not only do we have to go through many medical procedures, we also have to deal with the stares and the teasing. Even though I was fortunate to have had great friends in elementary school, I still got my share of stares in public and I was teased at summer camp. There were times when I came home crying and wishing I hadn’t been born with a syndrome. I hated that I was different. I just wanted to be the same as everyone else.

At 25 years old, I no longer ask “why me? Why was I born this way?” It took me a long time to accept myself for who I am on the outside. When I look in the mirror now, I don’t see a person with facial differences, I only see ME. The face I see is ‘Sabrina.’ This is who I am. My toughest challenge as an adult living with a rare syndrome is trying to understand why society sees me as ‘different.’ I may feel ‘normal’ on the inside but the stares I get from the outside world serve as a constant reminder - “oh yeah, I’m different.” Most of the time, I shrug it off and ignore these reminders. But of course, I have bad days too, where I feel frustrated and upset. However, I try to have very few of these days because I don’t want to let others make me feel bad and ashamed for what I look like on the outside. There is nothing wrong with how I look. My syndrome is a part of who I am and without it, I wouldn’t be the same person I am today.

Since I have accepted and embraced my differences, it has made me more determined to educate others about facial differences. I want the world to know that just because some of us look ‘different’ from the norm, it doesn’t mean there is something wrong with us. A teacher once told me “When someone stares at you, it means they are the ones with a problem, not you!” Whenever I feel frustrated, I replay that comment in my head and it makes me feel better.  When people are faced with the unfamiliar, they sometimes don’t know how to react. That is why it is important to spread awareness about rare diseases because the more people who know about it, the more acceptance we will gain from society. Maybe one day, we will live in a world where we won't be judged for how we look. 


1 comment:

  1. Very well written blog Sabrina! You are so right that there is nothing wrong with you but with people who are not accepting their own problems. You are wise beyond your years...very special :)

    barb brannen


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