TW: Mention of unaliving
Growing up, I experienced many different tics such as bending over to touch the floor, hitting myself in the chest, yelling random words, and yelling inappropriate phrases. The reactions that I got from people were split between three separate groups, and the contrast between each group was astonishing. One group of people would react negatively, with dirty looks, threats of restraining orders, nasty comments, and mocking gestures. This group of people made it very clear that they didn’t want to be near me. They would throw food at me in the lunch hall and yell “ew she’s coming near me” when walking past. The other group, however, seemed to want to be as close to me as possible, This wasn’t necessarily a good thing either. They didn’t want to be close to me out of respect, but because they were intrigued. They stalked me and watched me as if I was an exotic animal, one you would rarely see. I was just a walking “freak show” to them. I had an audience when eating lunch, eyes boring into the side of my head, with peers desperate to get the satisfaction of seeing me tic. Thankfully, the last group was the group of people who treated me like a human being with feelings and were kind to me. These people would stick up for me to the other groups of people.
Something which was always perplexing to me was the fact that so many people had negative attitudes towards me for having Tourette Syndrome. Yet so many people also came up to me and told me that they wished they had the condition themselves. I believe this stems from the false belief that Tourette’s is “funny” and allows you to “say whatever you want and get away with it.”
The thing is that when we tic, we aren’t saying what we want to say. We are sometimes saying the last thing we would ever want to say. Around 10–15% of people with Tourette’s are said to have Copolalia, which is where our tics come out with inappropriate and obscene remarks. It is similar to the intrusive thoughts seen in Obsessive Compulsive Disorder, which often focus on what a person is most against. Many people with Coprolalia feel guilty for their uncontrollable outbursts, and this is thought to be part of the reason why people with Tourette syndrome are four times more likely to die by suicide than the general population.
It is heartbreaking when someone thinks that Tourette’s must be “fun to have” because it is very distressing for many people. Not only do we deal with tics that can cause injury and lead to people viewing us negatively and bullying us, we often deal with co-occurring conditions such as OCD and ADHD which often add to the difficulties we face. It is said that around 85% of people with Tourette Syndrome have another condition co-occurring along with it. This isn’t to say that some tics can’t be humorous, there are some things that my tics come out with that can make me laugh - such as when they try to be a fashion critic by commenting on the clothes in clothing stores or when they say the right thing at the right time. However, this is just the tip of the iceberg and Tourette’s is so much more than this. When people tell me that they wish they had Tourette’s, they clearly aren’t aware of the physical pain that it causes when you do the same movement over and over again, and even when you desperately want to stop — you can’t. They clearly haven’t seen the dirty looks we get in public, just for existing, or the way we get kicked out of classrooms or told that we are not welcome in public buildings due to our disability being “disruptive”.
It’s just bizarre to me how I got bullied for having Tourette’s in school, yet now so many people act like they want the condition. People have come up to me saying “I wish I had your brain”, and I just reply “you really don’t”. It feels very invalidating when people act like Tourette’s is just something funny, or even something that is “desirable”. It shows that we still have so far to go regarding the awareness that we raise. We must show people the dark and difficult side of Tourette’s, as well as the few tics that can be funny.
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