What is it Like to Live With Tourette’s?

The author of this essay was a winner of a 2022 NJCTS Scholarship Award. 

This was the essay that was included with their application.

What is it like to live with Tourette’s? I used to get asked this a lot. Well, this is what it’s like. It’s Isolating and embarrassing, especially when people don’t understand what is happening. Its people thinking you’re faking or being annoying. Its people making fun of you and copying the sounds you make. It’s feeling like you can’t participate in class or go out with friends because you don’t know how your ticks are going to act today. Its hiding in the back of the classroom. Its spending time alone in your bedroom. Its looking in the mirror and wishing you were normal. Until one day it isn’t anymore.

Growing up, it took a long time before I was diagnosed with Tourette’s. I have two distinct memories of it that I will never forget. My first two tics were an eye twitch and a high pitch scream. The eye tics were tough because they really hurt my eyes. By the end of the day, I couldn’t keep my eves open. The strain on them from constantly moving was too much. However, I would take the eye twitch over the vocal tic any day. My vocal tic was so high pitched there was no way I could hide it. Not from anyone. My scream tic was prominent for a while before I was diagnosed with Tourette’s and my family didn’t know why I was doing it. I was sitting on the couch one day ticcing away and my sister got so annoyed and yelled at me to stop. She didn’t know I couldn’t help it, but it hurt me.

Another time Tourette’s affected me greatly, before I was officially diagnosed, was with some of my teachers in high school. My eye tic made it look like I was always rolling my eyes at teachers even though I wasn’t. One of my teachers in particular really didn’t like this and I was in trouble with her often. She would tell me I was being disrespectful and rude. I would tell her that I wasn’t being rude, but it always made her more upset. It took a lot of courage for me, but I finally decided to tell her that it was a tic and that my family and I were trying to figure out why it was happening. I felt embarrassed to tell her. I wasn’t sure how she would respond, but once I did tell her I didn’t get in trouble anymore and I was proud of myself.

I struggled academically in school. Besides Tourette’s I also have anxiety and ADHD. Dealing with all of these different things, plus the pandemic and virtual learning, really affected my performance in school. I made a huge academic change this year because I found a college that I absolutely love, Fairleigh Dickinson University. This past year I have been working incredibly hard to be an A student to prove to myself, my family, and FDU that I am capable of being a great student.

I hated being different. I really did. Until one day I was scrolling on social media and I saw a girl around my age with Tourette’s. She was unapologetically herself. she talked and she ticced. Her eyes twitched. She looked like me. It was helpful to me to see representation of myself. Tourette’s is so taboo, it’s hard to feel accepted when no one is talking about it. When I watched the video of the girl on social media, I accepted that it is okay to be me. Tourette’s is what makes me, me! Some people have brown hair, some people have brown skin, some people have a physical disability, and I have Tourette’s. It’s a part of me.



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