This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2013 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.
I was diagnosed with Tourette Syndrome and Obsessive Compulsive Disorder when I was 6 years old. As I got older, I tried to control my “tics” because I was embarrassed and afraid someone would make fun of me. I would try to hold my tics in all day long while at school and couldn’t wait until I got home so I could tick all I wanted.
Similarly, I rarely went on play dates after school because I wanted to go home so I could tic, and I never went on sleepovers because of the same reasons.
I continued to try and hide the “real me” until my freshman year in high school, when my doctor suggested I tell a few close friends about my TS and OCD. She related it to diabetes — a problem that you cannot control. I was hesitant about the idea and not convinced that it was OK, normal, cool or any combination of those words to have Tourette Syndrome — until my mother and I came across the NJCTS website.
Two weeks after the discovery of NJCTS, I told my two best friends about my TS, OCD and tics. They were wonderful and understanding. It became so much easier to relax with them, since I did not have to worry about hiding my tics. I even slept at one of their houses that night!
In April 2010, my life really changed forever for the better.
I was selected to represent NJCTS at the National Tourette Syndrome Youth Ambassador training in Washington, D.C. There I met other teenagers with TS, and from then on I understood that I was not alone and that I was really OK.
After training, I began speaking with students and teachers on a regular basis at schools about TS — a disorder that affects 1 in 100 people. I would explain what TS is and why you should not bully a person with TS or any disorder that they cannot control.
To reach an even wider audience, I wrote, illustrated and published the children’s book “Emily’s Tic.” This book depicts the pain and fears of children afflicted with Tourette Syndrome.
The sour diagnosis of Tourette Syndrome has turned into a sweet experience, helping me to become the person I am today. It was truly a making-lemons-into-lemonade moment when I found NJCTS. Its staff, programs and participants have given me the courage to be ME!
Because of what I learned through NJCTS, I now know that it is OK to have TS. I did nothing wrong to get it. I am not ashamed of who I am. I am just like everyone else. And no one is going to bully me!
With the support of NJCTS, I have come clean and will tell anyone and everyone that I have TS! And I will openly discuss my experiences — especially in the hopes that I can help someone else who has TS or any other disorder be proud of who they are.
My TS diagnosis and NJCTS have shaped my life. They have made me a more confident person, have given me the opportunity to gain leadership skills and have formed my career path. I hope one day to be a pediatric psychiatrist and help those with TS.
My journey with TS used to be a downhill roller-coaster — now it is only going uphill. and getting better and better!