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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Tourette Syndrome

Teenage school boy with a backpack walking to school

How We Learned to See My Son's Tourette Syndrome as a Blessing

Whenever I talk about my son having Tourette syndrome, I feel weird about the word “syndrome.” By definition, it’s not a derogatory word: Syndrome — a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms. Fair enough. So why the negative feelings when I use that word? I’ve reflected on this [...]
Teenage boy taking a selfie with his phone

To the Boys in the Restaurant I Caught Filming My Son With Tourette's

“Shaking a little bit does not change someone’s personality. It doesn’t mean you won’t have a successful life. Having Tourette syndrome just means I move a little bit. It has been both positive and negative. I feel different, but I kind of like being different. Sometimes people stare at me and I’m embarrassed. It’s OK if [...]
actors performing in biscuitland

Jess Thom, Actress With Tourette's, Is Making Theater More Inclusive

Jess Thom wants to make going to the theater more comfortable for people with disabilities. But her plan has nothing to do with the comfier seats or wider aisles. Instead, Thom wants to bring theater to those who may find it challenging to sit still or remain quiet for the full-length of a performance. Thom’s mission is an incredibly [...]

My Son With Tourette's Gave Me Advice Every Parent Needs to Hear

He was 11 and finally sitting in the front seat with me. It had been just the two of us for 10 out of those 11 years. I married my husband Scott the year prior, my son Andrew moved schools, and we lived in a new home — left our cozy/humble 800-square foot apartment on [...]