My Tourette Syndrome Is About More Than Cursing

Tourette syndrome. When I tell people I have it, their first question is almost always, “Do you curse?” My answer, “Of course. Usually not because of my Tourette’s though.” Only 10 percent of people living with Tourette syndrome curse. I am part of that 10 percent. I am not ashamed of that.

But just as only 10 percent of people with Tourette’s curse, less than 10 percent of my Tourette’s is cursing. It is 90 percent restlessness. A kind of restlessness that reaches through my mind, body and spirit. It can hurt at times (literally and figuratively), and it can drive a kind of energy, creativity one might even be thankful for.

For me, having Tourette’s means living in a body with arms that jerk, legs that kick and muscles that tighten, sometimes all at once several times a day. It means throwing my neck back, my head back. Repeating myself. Sniffling. Barking. Squeaking. Making high-pitched sounds. Having my body hijacked.

It makes being still an incredible challenge for me. Physically or mentally.

Having Tourette syndrome, for many of us, can mean living with “comorbidities” or what I like to think of as friends that tag along. For me, this means living with obsessive-compulsive disorder (OCD) and ADHD. It means having my mind stuck on one fear. Repeatedly. Repeatedly. Repeatedly. What if I misspelled that name? What if I made a mistake? What if I lose my job? How can I check? How can I make this better? Repeat.

It means tripping on details and doing everything I can to compensate for that. For me, it means becoming the queen of Post-it notes, carrying two calendars, and praying for other people’s mercy (and my own). I am doing my best, and I am always trying to do better.

Having Tourette’s does not make me less of a person. The restlessness has bred in me compassion for others’ invisible struggles and their own fights. I feel my struggle with details is compensated by my affinity for patterns, and the intense work I put into each day has made me a heck of a hard worker.

I am grateful for these things. Tourette’s has shown me a corner of the world I might not have known of, given me a reason to become a counselor, and I think it has made me more effective as a counselor. It has given me a restlessness to want to help others through this and similar challenges. It has given me a restlessness to advocate for the many injustices faced by people living with mental health conditions. Finally, it has given me a restlessness to want to teach others that Tourette’s is not a cursing disease. Yes, 10 percent of us may experience cursing tics, but for me, it is 90 percent restlessness.

Image via Thinkstock.

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