It’s time to discuss the side of Tourette’s that doesn’t get talked about

You probably don’t know what coprolalia is from just the medical terminology, but you’ll definitely recognise it. Coprolalia is “involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks”. What you don’t realise is coprolalia only affects a tiny amount of Tourette’s sufferers, but it’s the only part that people find “funny”, so that’s why everyone recognises it as the main symptom of the disease.

Tourette’s is an incurable brain disease. It’s a malfunction in the brain and is often caused by a hormonal imbalance, just like depression. The difference is no one finds depression funny. Tourette’s means your brain doesn’t connect up to parts of the body, meaning people can involuntarily swear, move parts of their body or twitch, and this is only a tiny selection of possible tics. I myself suffer from Tourette’s and have done since my parents noticed it in me at about age four. But no one diagnosed me until I was about 16, my parents always just thought it was a “nervous twitch” or I was “fidgety”. The fact they didn’t make the connection sooner due to it running in the family honestly bewilders me, but that’s another matter.

Tourette’s cannot be treated. There is no cure, and because it’s a “funny”, non-life threatening disease, while things like cancer still exist, it doesn’t look like there’s going to be one soon. Obviously I’d much rather prefer cancer to be cured than Tourette’s, but if Tourette’s had been cured, or even just talked about more, it would have saved me a lot of embarrassment growing up. The one thing you can be prescribed to suppress the tics is anti-depressants. The thing is, if you take anti-depressants while not depressed, they’re likely to make you depressed. It’s fucked up.

The other thing is therapy, which after months of nagging the NHS, I was given a few sessions with a guy who had no idea what he was doing. The most useful thing we covered was when he gave me a way of describing what Tourette’s felt like. Imagine needing to sneeze but with a part of your body, the longer you put it off, the more you need to do it. You can’t control it and you can’t stop it, you can only suppress it and feel extremely uncomfortable in the process. That’s exactly what its like.

The scary thing is, no matter how small your tic is, Tourette’s can grow at any time. This used to worry me a stupid amount, because I’d have a small tic, like blinking fast, and the next day I could hypothetically wake up with full-blown coprolalia, shouting ‘CUNT’ at every old lady I saw in the street.

The other fun thing about Tourette’s is that (most, not all) sufferers usually get another “disease” to go with it. For example, a sufferer might have Tourette’s and autism. In my case, it’s OCD. It’s like Satan reaches into a sack of fuckery covered index cards and plays a god awful game of snap. Dickhead.

Basically, the best thing you can do is ignore it. If you have a friend who grunts under their breath, twitches body parts, blinks really fast, mutters constantly or swears, trust me, they know something is wrong, you don’t need to tell them. Tics flare up worse when you’re under pressure or uncomfortable, and in exam season when people would prematurely say: “oh my god I hope I’m not sat next to Amelia again she’s so distracting”, it made them a hell of a lot worse. Ignore it. Don’t say anything, and the more the person relaxes, the less the tics will be an issue. Before I knew what was wrong with me, when someone said: “why are you blinking so much?” I’d blush, mumble I had something in my eye and then sit frozen, consciously monitoring my eye movements. Even typing this is bringing my tic back: the more a sufferer thinks about it, the worse it gets.

The other thing to know is that tics can come and go. I have three or four different ones, and they’ll come and go, being replaced by another one. They include verbal and physical tics. And going to a Catholic school with loads of hushed hymns, quiet prayer moments and silent study classes was an absolute nightmare.

Just remember next time you make a hilarious Tourette’s joke to your mate, one in 360 people have Tourette’s, and they’re probably uncomfortably trying to suppress that “sneeze” harder every time you bring it up for the lols.

This piece is part of a series on health and mental health. If you have a story you want to tell, email [email protected] to get involved.