Things Not To Say To People With Tourette’s

A few weeks ago, I participated in the BBC3 short video “Things Not To Say to People With Tourette’s”. The whole series is excellent. Other episodes deal similarly well with other misunderstood conditions such as dyslexia, bipolar disorder, and schizophrenia. Taking part was an excellent opportunity to debunk some common misconceptions about the condition (i.e. that people with Tourette’s swear all the time), but also to meet someone else with the condition (I’ve only met one other person with Tourette’s before). Please do check out the video, and the other ones in the series too.

 

I Talk Shit

profanity

I am part of a very elite group. No, I do not have an American Express platinum card, nor have I ever been part of the Bullingdon Club, or a member the House of Lords. Instead, I am one of the people with Tourette’s that actually swear.

And this is quite an exclusive group. Estimates vary, but anywhere between 10 and 25 percent of those with the condition experience coprolalia – the jargon term for the compulsion to say socially inappropriate phrases which pleasingly translates as “talking shit”.

“You have all the symptoms,” my consultant once told me. “All of them.”

The consultant was right. In addition to experiencing coprolalia, I have echolalia (the compulsion to repeat what others have said), echopraxia (the compulsion to imitate the gestures of others), palilalia (the compulsion to repeat what I’ve just said), and klazomania (the compulsion to shout).

And although all of these tics can be, in their own special way, a complete pain in the arse, it’s the coprolalia that does rather take the piss.

However, the phenomenon is widely misunderstood. Often, for me at least, coprolalia doesn’t even entail any cursing. Often, it’s just about being goddam rude.

For example, I regularly inform the people of the London Underground that they’re walking too slowly, and tell them to “come on” or “hurry up”. Loud people, on the other hand, will inevitably get a “shhh!” from me, and people who randomly stop at the top of escalators will be sure to receive a “MOVE!”.

Unsurprisingly, these tics can and do get me into pickles. Disgruntlement follows me wherever I go. Sometimes, people get so cross they say something. In these situations, my heart pounds. Sometimes, I leg it with my head down. Other times, I try to explain.

It’s these tics – the tics which make me tell strangers that they’re too noisy, too slow, too clumsy, or too much of a nuisance, that are far more awkward than any of the run of the mill, everyday swearing that comes out of my mouth. For example, if I randomly yell “SHIT” in a coffee shop, the general public will assume I’m a) mental, b) have Tourette’s, or c) have become very loudly and suddenly distressed. However, if I tell a dad pushing a pram to “HURRY UP” (which, mortifyingly, I did yesterday), the general public will assume I am a) goddam rude, b) goddam rude, or c) goddam rude.

These tics are also a bit awkward in the way that, unlike any of my other tics, they are actually indicative of what I’m thinking. If I let out a “bastard”, a “lemon” or a “pasta”, I am not actually thinking of bastards, lemons or pasta. However, if you just stop randomly at the top of the escalator with a queue of people behind you, and I tic at you “MOVE!”, I really do want you to move. Because it just doesn’t make sense to stop at the top of an escalator. You’re in everyone’s way.