My Tourette syndrome isn’t your source of entertainment, educate yourself

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A friend of mine once said, “If I had Tourette’s, I would use it as an excuse to swear all the time.” We were fifteen at the time, on a trip for someone’s birthday. I remember not properly comprehending what had been said at first.

No one actually says those things in real life, right? Statements like these only air on mediocre sitcoms. There was no way someone would actually say that to me. But there we were, sitting in a circle on a king-sized bed, listening to this girl go on a rant about how she wished she had my disorder because it would be “so funny.”

Everyone there that day has probably forgotten that conversation — another exchange lost to the passage of time. But I remember, and I am still angry.

Part of me wants to cut her some slack — we were young, and proper education on the subject was not really something you would have found in my town’s high school. However, I struggle to comprehend how a person could say such a thing, especially when their friend with said disorder is on the verge of tears every time the subject comes up.

Tourette’s continues to be the punchline in various forms of media, ranging from blockbuster films to homemade YouTube videos. I’ve personally even seen videos on TikTok of people faking the disorder.

My disorder isn’t funny. It isn’t cute. In fact, it’s annoying and can be embarrassing. Sometimes it’s physically painful.

I developed massive bruises on my wrists at age sixteen from slamming them together repeatedly. Once, I puked simply because my brain decided it was time to develop a gag reflex tic, and my throat clearing tic returned during a pandemic.

My disorder is not something to be laughed at, yet our society’s view of Tourette’s makes everyone think otherwise. At times, I even feel as if I need to go along with the jokes. It feels like no one wants to talk about my experience unless it’s presented as such — a joke.

I think part of me thought I would escape all of this when I came to SU. Maybe in a sense, I have — at least my current friends don’t say out-of-pocket stuff about my disorder. But I still feel the stares from passersby. I notice when people struggle to keep a straight face. I try to be understanding, I really do, because not everyone has been exposed to my experience. But at some point, I had to sit back and really ask why that is.

The first answer I came up with is that there is a lack of proper representation, but I’ve discussed that before. I then consider if it’s a lack of education, but the resources exist. It’s not as if the reality of Tourette’s is being kept from the general public. A simple Google search will reveal only 10% of individuals with the disorder suffer from coprolalia — a form of Tourette’s that results in the uncontrollable, obscene language often associated with the disorder in the public eye.

So I am left to consider a pessimistic point of view that only continues to feel more realistic as time goes on: maybe people don’t want to learn.

I don’t want to be that person — I am naturally inclined to give people the benefit of the doubt. But as I get older, it becomes more difficult to hold onto this hope. It’s now so much easier to fall down the rabbit hole of “people don’t really care” and “I’m just a living joke.”

But for the sake of others who I know are going through the same experience as me, I won’t let myself spiral (again). I don’t want to let myself fall into another puddle of self-pity, because I want to hope that maybe things can get better. I want to keep holding on to the belief that if I keep writing, then maybe at least a few people will begin to see the other side of the story.

To put it simply, my disorder isn’t a joke. Any attempt to educate yourself on the matter will only further my point. If we want to change how the world views Tourette’s and other disorders like it, we need to open our minds to learning the reality of those who live with it.

Grace “Gray” Reed is a Sophomore magazine, news and digital journalism major. Their column appears bi-weekly. They can be reached at greed04@syr.edu.