As told to Liz Sauchelli
Tourette Syndrome Awareness Month is May 15 to June 15
The night before taking a test in sixth grade, I wouldn’t worry about the questions, I’d worry about the silence. I’d go in the next day prepared with a small pile of cough drops on my desk, an easy explanation for the uncontrollable grunts I knew would come from my throat. Twelve-year-old me reasoned it would be better for my classmates to assume I had a cough than to explain to them that I have Tourette syndrome (TS) and face the judgment that would follow.
I was diagnosed when I was around five years old. My parents had noticed something was up after videotaping my preschool graduation ceremony. I was blinking and scrunching my nose a lot. At first, they thought I was just nervous or excited, but after they rewatched the video, they thought there was more to it.
I remember the neurologist who diagnosed me asking how I felt. At five, I responded by saying, “I just can’t control my movement. I just want to move.” And for the next seven years, I accepted TS — which included my eyes scrunching and my nose and head twitching — as something my body did, not as something that defined me. My parents and I educated my elementary school community about TS, and my classmates and teachers responded with acceptance, leading to a close-knit community where I was fiercely protected.
That changed when I went to middle school and entered puberty — and my tics became more pronounced and more frequent. My new teachers asked me to sit still, and I would have to constantly explain that, even though I physically could not sit still, it didn’t mean that I wasn’t engaged in what we were doing. My new classmates bullied me, and I began to let their perception of me define who I was.
I was not kind when I spoke to myself. If I ticked, I’d reply internally with the mean words and phrases of my bullies. My twin sister also suffered from seeing me bullied and being my constant defender. Because I couldn’t control my tics, I developed anxiety.
I was also going through a lot hormonally and developing the curves I so love today. But back then, I thought, “I have a big personality, and my body is maturing. I move and I tic. I’m just too much all around.” I just didn’t feel like I fit in anywhere.
My parents were my saving grace. They set me up with a therapist who helped me work through my anxiety and how I viewed my TS. They were supportive but didn’t coddle me, instead encouraging me to see Tourette syndrome as my secret sauce and part of what makes me, me. When I’d come home from school feeling defeated, they’d say, “What you have is doable. You don’t have anything that’s life threatening. Educate people. If people laugh at or bully you, look them in the eye and say, ‘Do you want to know why I do what I do?'”
In seventh grade, I came to the conclusion that I could either let my TS be a tragedy or I could turn it into something empowering. From that point forward, I accepted that my Tourette syndrome wasn’t going anywhere and decided to be happy. I stopped trying to hide it and stopped putting cough drops on my desk during tests. When I ticked and people laughed, I’d laugh with them and teach them about TS. My classmates started to rally around me, and when someone bullied me, they’d defend me.
I also found comfort in music, art, meditation and physical activity, which helped to decrease my tics. I performed on the violin and piano. I played tennis and frequently hiked with my family. My biggest solace was in collage art: I’d spend hours combing through old magazines my mother collected, cutting out images and putting them together in a new way.
Since middle school, my TS has ebbed and flowed. It got better in high school, but when I first went away to college, my anxiety increased alongside my tics. I went on anti-anxiety medication, which helps. I limit sugars and caffeine in my diet, which also helps.
Still, the tics are more than an annoyance; they are physically painful. I’m lucky I have a mild case of TS, but because of my constant movement, I live with a chronic stiff neck and tension headaches.
I’m now 36, a chief of staff, and work training executive assistants for a major technology company. When I meet new people, I almost immediately tell them about my TS. I let them know that if I move, it has nothing to do with me being uninterested in what they’re saying. I help educate people about Tourette syndrome, that way when they meet someone else with the syndrome they can treat them with respect.
Sometimes people I’ve encountered in my professional life haven’t been understanding, and similar to my middle school bullies, they’ve judged me because of my TS. When that happens, those old adolescent wounds reopen and I have to remind myself of how I can reframe those situations as learning opportunities.
I remember that people don’t really understand what Tourette syndrome is. They only see inaccurate representations in the media where people with TS are portrayed as having outbursts that often include offensive language. The medical term for this symptom is coprolalia, and the truth is that less than a third of people with TS exhibit coprolalia.
Recently, I participated in a visual art project featuring women confronting their trauma. I filmed myself in a visual collage where my tics were shown. Watching that video, I recognized my tics for their beauty. Even though it’s not what people would consider to be normal, it’s unique and uniqueness is what makes the world go round.
If I could go back in time and talk to my 12-year-old self, I’d tell her, Home in on what makes you special, what makes you — for lack of a better word and no pun intended — tick. Use that as a superpower and a way to connect in the world. Let that drive you to be a more empathetic and compassionate person. Don’t lose hope and love yourself endlessly because you are — and always will be — enough.
Tourette Association of America