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

I Talk Shit

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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.

Questions People Ask When I Tell Them I Have Tourette’s

  • What’s that?
    People ask me this so often it’s a wonder why I haven’t memorised a paragraph explaining what Tourette’s is. Anyway, Tourette’s Syndrome, or, for the acronym-prone amongst us, TS, is a neurological condition which causes those with it to experience tics – involuntary rapid movements (called motor tics), and involuntary sounds, words, and sentences (called vocal tics). Tics can be painful, embarrassing, or, more often than not, just a total pain in the arse.
  • How does your Tourette’s manifest?
    Tics change all the time, and everyone’s Tourette’s is different, but right now my motor tics include head nodding, eye rolling, eye scrunching, eye shutting, eye darting, cheek slapping, head hitting, tongue sticking, air blowing, head jerking, head banging, finger flicking, hand punching, bird flipping, jazz handing, stomach clenching, knee buckling, leg twisting, feet twisting, and feet kicking. In addition, I also experience echopraxia: the compulsion to imitate the movements and gestures of others.
    As for my vocal tics, they include grunting, whistling, clicking, “lemon”, “lemons”, “lemongrass”, “you’re a fuckface and I hate you”, “you’re so weird” “you’re a *insert literally any expletive here*”, “you’re a *insert literally any random word here*”, “you’re so weird”, “come on”, “you’re walking too slowly”, “move” and “hey”. In addition, I experience echolalia: the compulsion to repeat what has just been said, palilalia: the compulsion to repeat what I’ve just said, and klazomania: the compulsion to shout.
  • When did you get it?
    Normally people get Tourette’s age six or seven, but I developed it at the grand old age of twenty-one. My first tics were clacking my jaw and screwing up my eyes. In the year that followed, the symptoms got progressively worse. Eventually, I was swearing which was when I knew for sure that I had Tourette’s.
  • How do people get even Tourette’s?
    Tourette’s is this complicated neurological thing which no really understands yet. It’s got something to do with dopamine and the basal ganglia, the thalamus and frontal cortex parts of the brain. It is linked to conditions like OCD, ADHD, and Autism Spectrum Disorder, and is genetic.
  • Is there a treatment?
    Yes, but there is no cure, just some medications and therapies which can alleviate some of the symptoms. However, the medicines used are basically second-hand, as they are really intended for schizophrenia and other psychotic disorders. Unfortunately, these drugs come with a lot of side effects, and so for many people with Tourette’s, they just aren’t worth it. That said, for some people they work really well. It’s all a bit of a guessing game.
  • What’s the worst things you’ve ever said or done?
    Just a load of c-words really, but during my final year of university I had a Spanish oral exam during which I could’t stop blowing my examiners kisses. It was pretty awkward.
  • Do you ever say anything rude, and just pretend it’s a tic to get away with it?
    I get this one a lot, and the answer is no, no I don’t.
  • Really? Seriously? You’re not fucking with me? You actually have Tourette’s?
    If I am going through a quiet patch, this is the normal reaction. Or else, they’ll ask me if I have really mild Tourette’s (which I don’t). Many people don’t know that Tourette’s is a condition that waxes and wanes. People with it can go through months where their tics are so severe they are disabling, and months were their tics are so mild you can barely notice them.
  • Haha.
    This is frustrating response, given that I’ve just told you about my disability and not cracked one of my many brilliant jokes. Yes, some of my tics are funny, and yes, in those situations, it’d be weird not to chuckle. But if I haven’t ticced anything amusing, if I’ve literally just told you about my Tourette’s, then please don’t laugh. Wait for a good tic to laugh. It won’t be long, I promise. Think about it, if I just told you I had dyslexia or autism, would your immediate response be to laugh? No. Because these things aren’t funny, and neither is Tourette’s.  

Tourette’s Broke My Window

Tourette’s has taught me a few things. Most of these centre around what you’d expect: the general lack of awareness surrounding the condition, people’s differently weird reactions to tics, the fact that lots of people don’t get that Tourette’s is a disability, not a punchline.

But, recently, Tourette’s has also taught me that glaziers in London are really expensive, that Januarys are really cold, and that items you’d expect to be really breakable are actually really strong, and items which should be strong are actually really breakable.

This is because, in the past few weeks, seemingly for no particularly reason at all, my Tourette’s has decided I need to be punching walls, mirrors, my face, and, crucially, windows.

This wouldn’t be a problem were it not for the fact that hitting hurts and punching breaks things. So far, the main casualties have been one window pane and my right hand.

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Frustratingly, normal self-care is all but useless. For example, in order to soothe my hand, I soaked it for a while in ice water. However, during the soaking, my Tourette’s decided to lift my arm out and whack it against the wall near me, undoing all the good the ice water would have done.

As a consequence of my punching tic, recently, a lot of people have told me to ‘take care’ or to ‘look after myself’. But how do you take care when you have a condition that makes you say and do things that are beyond your control? The way I look at it, I’m not even the one punching the walls, my Tourette’s is. I can’t help it. All of this is involuntary, and unless I am locked away in a padded room, there isn’t a way I’m not going to somehow hurt myself.

Unsurprisingly, these self-injurious tics have been a little frustrating. But the changeable nature of Tourette’s will no doubt work in my favour. In a few weeks, the glazier will have come and gone, my hand will have calmed down, and there will be little to no trace of the punching tic that is currently bothering me.

In the meantime, I’ve found a compromise between wrapping myself in cotton wool and locking myself in a padded room: padded gloves. They’re not very attractive, but they do the job.

 

9 Things Tourette’s Has Taught Me

  1. People don’t care about you. Every day, I walk through central London, whistling weirdly, clicking my tongue, saying random sentences, swearing, repeating what others have said, shouting, almost falling over because of the tics in my legs, hitting my head, and slapping my face. It could well be a symptom of living in such a large city, but people look at me, stare at me a bit, and then look away. That’s it. Those are the consequences. In a way, this is more liberating than depressing. It makes you realise we don’t have to follow all of society’s stupid rules.
  2. People rarely really understand what Tourette’s is. A lot of people simply equate Tourette’s with swearing. A lot of people think Tourette’s is a mental illness. A lot of people think Tourette’s is just a punchline. Few people realise just how diverse the condition is, meaning that a large part of having Tourette’s is explaining what Tourette’s is.
  3. I didn’t really understand what Tourette’s is. Before experiencing the symptoms first-hand, I had no idea that repeating what others do or say is a facet of Tourette’s, I had no idea that tics constantly change from week from week, and I had no idea that me having Tourette’s had anything to do with me having OCD.
  4. People with Tourette’s have to tell people they have Tourette’s all the time.
    For me, one of the most awkward things about having Tourette’s is knowing when and who and how to tell people I have it. Sometimes, it’s obvious. For instance, I know I have to tell my hairdresser, because I might move suddenly and then she might cut off half my hair. But do I tell shop assistants? Every single customer that walks in the door of where I work? Waiters? Fellow gym-goers? Random strangers on the Bakerloo Line who have just heard me shout “shit” at the top of my voice? Sometimes, when I do tell people I have Tourette’s, it doesn’t work out too well because they don’t know exactly what it is. Sometimes, when I do tell people I have Tourette’s, it feels a bit like I’m saying, “Hello, my name is Alice, and this is what’s wrong with my brain.”
  5. People react to tics very differently. Sometimes, if I am ticcing in a café, staff will speak to me in a patronising way. Sometimes, if I am ticcing in a shop, security will be suspicious and follow me around. Sometimes, if I am ticcing in a public place, people will think it’s OK to stare at me, as if they can figure out what’s wrong with me just with their eyes.
  6. A small percentage of tics are funny, but most are just annoying. When I say “You’re a low-calorie bitch!”, or shout out the letters I have in Scrabble, that’s funny. But if I smash a window with my fist, or hit my head against a wall, or can’t stop shaking as I try to go to sleep, then that’s not that funny. It’s annoying.
  7. Tourette’s hurts. If you repeatedly make the same movement over and over again, whether it be a heard jerk, muscle clench or – my current favourite – wall punch, then that’s going to hurt. Maybe not immediately, but eventually. But Tourette’s also hurts, like, feeling-wise. I have been excluded from stuff because of my Tourette’s, and it feels…unfair.
  8. If someone has a problem with you having Tourette’s, if they are especially embarrassed by it, or if they don’t want to be around you when it’s particularly bad, then they probably aren’t worth knowing. I started ticcing when I was in my early twenties, and it made me realise that the friends who had a problem with it weren’t actually friends, and the friends who didn’t have a problem with it were awesome. This was very helpful information.
  9. There is no rule book to living life. There is even less of a rule book when you have Tourette’s. Since developing Tourette’s, I have asked myself the following questions: Can I drive with Tourette’s? Can I work in customer-facing roles with Tourette’s? Can I work with Tourette’s? Can I go to the cinema with Tourette’s? The library? The theatre? And the answers are all the same: Sure. Maybe.

I Wish I Had Tourette’s

“So what do I do if I want to buy a bottle of wine?” the customer asks me.

“To have in *hey* or *hey* take away?” I ask.

“Take away.”

“You just literally *hey* take it to the till and *hey* pay for it there,” I say. “Sorry, I have Tourette’s. I don’t mean to say *hey* all the time.”

“Oh, do you?” the customer says. “I wish I had Tourette’s.”

He says this laughing, presumably because he thinks what he’s said is funny. And I laugh too. Not because I think what he’s just said is funny, but because I am serving him, and that’s what you do when you serve people: you laugh at their jokes regardless of whether or not they are actually funny.

Presumably, the customer equates Tourette’s with swearing, likes to swear, and wouldn’t mind getting away with some more profanity in his life.

But coprolalia – the compulsion to say socially unacceptable words and phrases – is quite rare amongst people with Tourette’s. It’s a small part of a largely unfunny and totally unsweary (not a word) condition.

For instance, this week, I’m punching walls and kicking cupboards. My hand is red and swollen and painful and my knees keep on buckling when I try to walk. This is affecting my communication and mobility, but on top of this, my Tourette’s is also affecting my vision, because my eyes are rolling, darting and shutting of their own volition.

But the customer’s reaction is so familiar that I’m not even frustrated or surprised by it. In truth, it took me only a few weeks of having Tourette’s to realise that, for many people, Tourette’s just isn’t a disability, it’s a punchline, and when people hear a punchline, they laugh.

How To Go Shopping

This is the excerpt for your very first post.

I’m in a store which sells tasteful, Scandinavian gifts and homeware. Essential items like beard oil, boxes of salted liquorice, and decorative wooden elephants costing over one thousand pounds.

In this tranquil shop, full of tranquil people, browsing for tranquil things, my klazomania kicks in.

“Lemon!” I shout. “Lemon! Lemon! Lemon!”

The shouting really does jar with the store’s ambience. But, hey, people with Tourette’s need to buy beard oil too, and so I continue to meander through the rows of goods that I cannot afford.

It’s not long before I notice my shadow: a security man drawn to my citrusy speech. He watches me, approaches me, staying near but not that near, and never actually deigning to talk. 

Voluntarily, I throw him an inane grin and, involuntarily, another “Lemon!”

I get it. He wants to figure out whether I am a shoplifter, or some strange citrus-based troublemaker. But if I wanted to pinch anything from this store (which –  if I had no moral compass – I totally would, everything here is so goddam tasteful), I would be quiet and not loud about the process.

It’s just common sense that people with Tourette’s make for bad shoplifters, though. Especially with my Tourette’s, because  as well as shouting out “lemon!” at random intervals, I am also prone to saying “yoink!” whenever I pick up something.  

On my way out, I want to tell the security man I am a klazomaniac, not a kleptomaniac. But I don’t, not only because klazomania is, some might argue, one of English’s more uncommon words, but also because I don’t want to offend any thieves in the vicinity.

So, I exit the shop, liquorice-less, beard oil-less, and elephant-less, leaving behind a wake of bemusement and amusement, and I’m on to the next store, an afternoon of loud lemons stretching out before me.