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Personal Stories - Hey, It’s A Genetic Thing

Hey, It’s A Genetic Thing

By J. Z. (age 17)

“Dealing with Tourette’s Syndrome and OCD has made me a stronger, better, and more empathetic person. I don’t use my disorders as a crutch, and I don’t let them get in the way of what I want to do.”

I’m living proof that OCD and Tourette Syndrome are linked and run in families. I had the genes coming at me from my mom’s side and from my dad’s side, and I ended up with both disorders. My tics started in first grade. I had a high-pitched vocal tic, followed by facial tics: blinking, grimacing, grinding teeth.

Tics come and go, and I had quite a parade: sniffing tics, grunting tics, slurping, whistling, humming, tics in my hands, legs, and neck, and even a shrugging tic that gave me whiplash. I had a tic to tighten my abs that made it hard to digest food. I even ticced in my sleep. I also had “Tourette storms” – uncontrollable rages – but fortunately I was pretty little at the time, and usually within yoinking distance of one parent or the other.

My teachers blamed my parents, and my parents probably blamed themselves. My aunt, who’s a teacher, thought it might be TS, but the counselor my parents were taking me to at the time said, “Oh, no, this isn’t what Tourette looks like.” Sorry: this is exactly what Tourette looks like. Some people think TS is only coprolalia, the swearing tic, which I didn’t have. It wasn’t until the fourth grade that a smart neurologist diagnosed my TS. My parents breathed a sigh of relief and started reading all the books about Tourette they could get their hands on.

In sixth grade, the mental anguish of OCD joined the physical torment of Tourette. I had scrupulosity (fear of hell, compulsive praying) and contamination obsessions. I couldn’t sleep because my mind swirled with dread of hanta virus and eternal damnation. I couldn’t eat for fear that chemical residue from science class might be on my hands. The grades took a nose dive.

My brother was already getting ERP (exposure and response prevention) therapy for his OCD. When I told my mom what was happening, she booked my appointments right after his. I remember her packing up for our ERP appointments: a three-toggle light switch she had screwed together out of Home Depot stuff for my brother (he had evening-up OCD), and cookies and chemicals for me.

ERP works. I learned how to manage the OCD and get on with my life. The grandparents may not always understand the ERP lifestyle (like when my sandwich fell on the floor and my mom said, “I’ll give you five bucks if you eat it!”), but they get used to it.

Dealing with TS and OCD has made me a stronger, better, and more empathetic person. I don’t use my disorders as a crutch, and I don’t let them get in the way of what I want to do. I got the grades back up, learned to play ragtime piano, did a stint as a Kidnews “Scoop Trooper” for the Chicago Tribune, taught myself stage magic and balloon sculpting, started working out, and next year I’ll be going to college.

If you have TS/OCD, get out there and learn about your disorders and make sure your family and teachers understand what you have. Then think about all the good genes you got in the mix, and make the best of them.

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