Can't Stop: Things I Worry About as Someone With Tourette's Syndrome
I used to be afraid of the police. I’ve had this dream in the last few nights of police coming to where I live because of my yelling. I have Tourette syndrome and I yell “stop.” It’s a tic. It’s a tic I can only control for so long; I hold it back a lot. I tic most at home and in the the car. Stop!
Yelling “stop!” is a great way to capture someone’s attention. Stop what? Are you OK? For me, when I’m holding back a tic, not yelling “stop” is a great way to capture my own attention. Holding back gives a sense of tension, anxiety. It’s physical, psychological, and absolutely real. I can hold back, but I can’t stop.
People like to joke about Tourette as though it is some kind of marvelous scheme to get away with cursing at other people. It’s not. Having Tourette syndrome can feel like an everlasting fight you cannot win. Your opponent is yourself. The more you fight off the urge to yell, to squeak, to bark, to twitch, to do any number of these random tics the more the tension grows.
On the flip side, the more you give in the more isolated you may become. I have learned to “rock” my tics and to gain both others’ and my own acceptance. It has been a fight. Fighting is exhausting. Not fighting is exhausting. I can’t stop. So what if the police were to intervene? It’s not illegal to yell “stop.”
In my dream I handed them my ID card. I carry it in my wallet. The front gives a description of TS. On the back it reads “My condition is covered by the Americans with Disabilities Act.” That is key. Under the ADA I can not be discriminated against for my tics. I can not be arrested for a tic; I can not be forced to leave a location because of a tic. Any school is required to provide me “reasonable accommodations” if I request, as is my work — if I were to need them.
At one time, it was very hard for me to advocate for myself like this. It felt like an excuse. I knew I could only hold back so long but still I wondered, if I am able to keep this on the quiet so many hours some days, why can’t I do the same just a few more? How is it that I can not control my own lips? I even questioned if it’s fair to call this a disability. But it is. It is a neuro-psychological disability. Maybe it would be better called a disability of free will. I can’t stop. Can’t fight myself. But I can fight the misunderstandings.
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Thinkstock photo via John Howard.