This Is What Tourette’s Syndrome Feels Like

About two years ago, I started to whistle –  a seemingly ordinary event that struck me, and everyone else around me, as incredibly odd. It was not so much the fact that I have never been a whistler, but rather that I was whistling without really wanting to. I felt my lips go round, my ears registered the sound, but somehow it didn’t really feel like me.

Soon enough, similar things started to happen. When sitting an oral examination at university, I blew my examiners a kiss. When on the tube, I made eye contact with a commuter before telling him to fuck off. In the queue for the toilets, I let out a “woo”, and the woman in front actually backed away.

It felt odd going to the doctor. I was not in pain, but something was clearly wrong. I told him I couldn’t stop jaw clacking, stomach clenching and head nodding. I told him I was bird flipping, lip smacking and eye winking. I told him I was jazz handing, fake laughing and face grimacing. I told him I was bastard-ing and fuck-ing and shit-ing, and I told him I couldn’t help it.

Despite what I thought were incredibly odd symptoms, the doctor was unfazed. “Are you obsessive or depressive at all?” he asked. I answered that I was. “A classical history,” he said, before bestowing me with a diagnosis of Tourette’s Syndrome. And just like that, I transformed from a person without Tourette’s, into a person with Tourette’s.

Later, I realised that the doctor had been wrong. The word “classical” refers to “the culture of the past and to art forms which belong to a long formal tradition”. This meant that “classical Tourette’s” was a phrase that meant nothing. The word “classic”, however, denotes “a perfect or most typical example of something”. This meant that the phrase “classic Tourette’s” would have meant something, but even then I wondered whether this was accurate. Normally, Tourette’s starts when you are six or seven years old. Normally, people with Tourette’s do not have the swearing variety of the condition. Normally, people with Tourette’s are male. I was an obscene twenty-two year old woman who did not seem to fit the bill.

Either way, with classic or classical Tourette’s, ordinary or extraordinary symptoms, I was ticcing like a clock, every hour of every day, every day of every week. I tried to get my head round this new affliction of mine, and to do so even ended up starting a blog called “How To Have Tourette’s Syndrome”, as if I were some kind of authority on the matter. The only problem was that I did not know how to have Tourette’s. I had absolutely no idea. There were, all of a sudden, a ton of questions without answers. Could I drive with Tourette’s? Could I go to the cinema with Tourette’s? What about the library? Could I sit my exams in same room as everyone else with Tourette’s? Could I work in customer-facing roles with Tourette’s? Could I work with Tourette’s?

I asked people who knew about Tourette’s as well as the people who didn’t, and without exception, they all told me to live my life as though I didn’t have the condition. In theory, this should have been good advice, because, actually, having Tourette’s feels like nothing. You make a sound or do a thing and that’s it. The people you live and work with ignore it, because they are used to it. And you ignore it too, because you are used it. But at the same time, having Tourette’s Syndrome feels like a really big problem, or to be more precise, it feels like several really big problems piled up high.

Having Tourette’s feels like people are looking at you. This is not you being paranoid, because paranoia is an irrational suspicion about things that aren’t really happening, whereas when you have Tourette’s, people really are looking at you. However, despite how awkward it feels to be stared at, staring at someone with Tourette’s is a perfectly normal  activity. Staring is just a screening process. When someone has a tic, they are, objectively-speaking, doing something weird, and so the general public is just trying to figure out what they’re doing and trying to ascertain whether or not that person is a threat. Hopefully, they will realise the person has Tourette’s: that well-understood, well-talked-about, well-accepted condition everyone is familiar with. Or, perhaps more probably, they’ll realise nothing and just continue to stare.

But then there’s more than staring. Turn on your TV and there’s a chance you will flick on to a show which features someone, fictional or otherwise, with Tourette’s. He will invariably have the swearing variety of the condition, even though study after study has shown that the vast majority of people with Tourette’s do not swear. Maybe he is trying to get a girlfriend, or a job, or maybe he is just trying to make his way through the airport without saying the word “bomb”. This programme will invite you to look at how hard it is for this strange man to do something incredibly ordinary. It will shine a light on to his misfortunes, and turn them into a spectacle so that we are all duly entertained.

Sometimes, when you’re not being stared at, Tourette’s feels like you’re being laughed at. This is not you being paranoid, because paranoia is an irrational suspicion about things that aren’t really happening, whereas when you have Tourette’s, people really are laughing at you. However, despite how awkward it is to be laughed at, laughing at someone’s tics is a perfectly normal activity. It’s just incongruity theory. When you tic, you are saying what you shouldn’t say, when you shouldn’t say it. It’s what is least expected, so it’s funny. It might even be funny to you too – and that’s all good.

However, when writers write scripts in which people with Tourette’s are the punchline, and when production companies produce those shows, and when broadcasters broadcast them, it kind of feels like society is laughing at you. Tasteless jokes happen all the time, because that’s how comedy is. Comedy pushes boundaries, and everyone’s boundaries are different. Nevertheless, most people agree that making fun of a person with a stutter because they have a stutter, or making fun of someone with autism because they have autism, are jokes that are just not that funny. However, the same does not go for Tourette’s. Tourette’s is fair game. Look out for it, and you’ll see that Tourette’s is a punchline everywhere.

Sometimes, having Tourette’s feels like explaining Tourette’s, like, all the time. This is because, even though the condition is about as common as autism, there are still some people who think it’s not a thing, and some people who think that just because you are not ticking right there and then, you don’t have it. Other times, having Tourette’s just feels like paperwork, because unless you want to be confronted with a lot of red tape, awkward conversations and unnecessary faffing, it is often highly inadvisable to declare it before starting a new job. Undoubtedly, having Tourette’s feels like waiting, because over a year on the waiting list for treatment on the NHS is a thing that totally happens. It could also be that having Tourette’s feels like the least of your problems, because there is a good chance that, on top of Tourette’s, you have ADHD or OCD or good old fashioned depression, or all three, if you’re a very lucky thing.

There is not much that can be done about having Tourette’s. There are treatments, but no cure. Despite all this, there is little reason why it should prevent anyone from doing anything. It’s not a condition that affects your intelligence or your sense of humour or your personality. It does not mean you are dangerous or weird. All it means is that you have Tourette’s. And this shouldn’t matter. You should totally be able to live your life as though you did not have it, but it’s not that simple, because how Tourette’s is perceived really, really sucks. People think that Tourette’s is a thing other people have, that it’s ridiculous, that it’s weird, that it doesn’t even exist. People think that people with Tourette’s can’t work with other people because they’ll annoy them, or distract them, or offend them.

These people are wrong. Tourette’s is harmless –  it is sounds and movements which mean nothing at all. But when society tells you that your condition is comical, that you are too unpredictable to work in the same environments as everyone else, or that your too odd to be anything other than the centre of attention wherever you go – it’s these ideas that mean something, it’s these ideas that do the harm, and it’s these ideas that need to die.

This post also appears on the Tourettes Action blog

How To Have Tourette’s

cropped-220px-georges_gilles_de_la_tourette.pngFirst, be born. But to be specific, be born into a family where someone somewhere once had Tourette’s, OCD, ADHD or something like that. Congratulations, you have a) been born, and b) inherited this gene. Both feats are highly unlikely, and yet you have achieved both without even trying.

Don’t worry though, you haven’t got Tourette’s yet. You’re just a baby. Fingers crossed, you may never get it. You might just keep the gene tucked away forever without anything happening. For now, it’s a waiting game. For now, all you have to do is grow up.

For reasons unknown to everyone – even the people who know lots about tics and Tourette’s and brains – if you do get the syndrome, it’s likely it will kick in age six or seven. But really, any age will do. Actually, let’s say you’re a lot older. Let’s say you’re about twenty when you can’t stop clacking your jaw and screwing up your eyes.

You don’t worry about it, though. The OCD you’ve had since forever is currently going haywire. You’re checking and touching and counting and this just feels like an unwelcome extension of that damned disorder. Your OCD makes you do things you don’t want to do, and your tics – which you don’t even know are tics yet – also make you do things you don’t want to do.

Months of jaw clacking, eye blinking and stomach clenching pass. Then, one morning, you’ve woken too early and you hear yourself say “bastard”. You didn’t want to say it, but you said it anyway. Felt your mouth make the shape. Heard your voice make the sound. Your heart sinks. You’ve done some googling about jaw clacking, eye blinking and stomach clenching and you have had your suspicions.

You do not want this to be happening, and yet it is.

From then on, it all gets worse. Pretty quickly, too. Soon enough, you can’t control what you’re saying or doing. It’s not nice. It’s like you’re a puppet being controlled by someone who doesn’t like you. The puppeteer wants to mortify you, hurt you, mock you, and you can do nothing but dance along to his games.

You see your GP to be referred to a neurologist, but the consultant you see is unfazed by your symptoms. All he says is what you already know: that you have Tourette’s. Tourette’s: the condition characterised by both vocal and physical tics. Tourette’s: the condition associated with ADHD and OCD and young boys. Tourette’s: the I’ve-heard-about-that, the I’ve-never-met-anyone- with-that, the ha-ha-ha-isn’t-that-the-swearing-thing.

“Do you have any questions?” he asks, after the briefest consultation known to man.

“Will it go away?” you ask.

“No,” he says.

Congratulations, you now have Tourette’s.

Go home and research the condition thoroughly even though you’ve already researched the condition thoroughly. Feel odd about the fact you’ve got Tourette’s thirteen years later than average. Feel like this means you can no longer call yourself a punctual person. Feel odd that most people don’t have the swearing variety of the condition and that you do. Feel like this means you can no longer call yourself a polite person. Feel odd about telling friends and family about your brand-new condition. Feel odd when they express pity. Feel odd when they express disbelief. Feel odd when they just laugh. Feel odd.

Now is the time to have a quiet crisis. One of the “what now?” variety.

In the meantime, tic, tic, tic, toc, toc, toc. Whistle your lips and click your tongue. Jazz your hands and flip your birds. Twist your legs and shake your arms. Swear. Echo.

In the meantime, graduate from university. Now is the time to have another quiet crisis – another one of the “what now?” variety. Find it hard to imagine a future of any sort, but go to job interviews anyway. Feel so much trepidation about them that you can’t sleep beforehand and you screw them all up.  Receive the rejections with rage or dejection or absolutely nothing at all. Feel like you’re too weird to be employed. Feel hopeless.

Soon enough, it becomes abundantly clear that you are going to have to employ something called a sense of humour. After all, Tourette’s is a chronic, incurable condition. There is little point raging against it. You find yourself telling little kids they are little shits, blowing kisses to complete strangers, and calling cashiers twats. It’s embarrassing, but it’s funny.

So laugh a bit, when you can. But only a bit. Because, after all, it’s only funny to an extent, and tics are more often than not annoying or painful or awkward. You smash up your hand, you smash up the window, you hit your head, you slap your face, and you can’t walk that well. None of this merits any laughter.

In the meantime, find out that Tourette’s is like the moon: it waxes and wanes, comes and goes. During one of these deliciously quiet phases, pounce, run away, and get a job.

After much debate, tell colleagues and bosses why you whistle all the time. Explain the Tourette’s will get worse at some point, and when it does, when you’re ticcing all the time and can’t stop making all manner of odd sounds, when you can’t stop jumping or shouting out the c-word in front of customers, carry on regardless. Carry on with: “A chuckle and a shrug,” your colleague says. “You deal with your condition with a chuckle and a shrug.”

Think this is apt. Think that you do indeed treat Tourette’s with a chuckle and a shrug. Think that this is the only way you can think of having Tourette’s right now. But also think that, even if you live until you are two hundred years old, you will never quite know how to have Tourette’s.