A Tourette’s Survival Guide

  1. A sense of humour.
    For obvious reasons.
  2. Social dexterity.
    Sometimes, Tourette’s is going to land you in the soup. You’re going to shout something mean in the vague direction of someone who doesn’t want to be called something mean. You’re going to make noise in places where it’s frowned upon to make noise. You’re going to accidentally tear down a load of decorations.
    In these situations, it’s important to know when it’s appropriate to explain your condition and how exactly to do so. This is very tricky.
  3. The ability to leg it at any given moment.
    Even if you have explained why you’ve done what you’ve done in painstaking detail, even if you have used the words “can’t help it”, “condition”, “neurological” over and over again, there will be some people who are pissed off that you a) have just told them to piss off, b) just broken their prized possession, or c) just interrupted their production of Hamlet with a grammatically unsound sentence chockfull of surprisingly creative expletives.
    In these instances, run.
  4. The ability to chill out.
    Other people’s attitudes towards Tourette’s can be very annoying. Some people do not understand why people with the condition cannot just shut up. Some people dismiss the condition as literally not existing. Some just treat the condition as a punchline.
    All these attitudes can and will be angering. However, rage is very energy-consuming. It’s therefore important to realise that you cannot change everyone else’s opinion, and that what other people think is beyond your control. In other words, it’s important to chill out.
  5. A propensity towards not being embarrassed even in objectively embarrassing situations.
    For most people, blowing strangers kisses, shouting out “tit” in the middle of the street, and telling cashiers that they’re twats is mortifying. It’s helpful to get over this embarrassment quickly, as it’s inadvisable to live life constantly blushing.
  6. Flatmates and neighbours unperturbed by random eruptions of sound.
    Whenever it’s late and perfectly silent, my Tourette’s invariably decides to shout. Right outside their rooms, too. Right outside where they are sleeping.
  7. Good friends.
    Having Tourette’s is an excellent filtering process. People who can’t handle you having the condition would most probably be bad friends. People who couldn’t care less about you having the conditions would most probably be good friends. Life with Tourette’s can be a little tricky, so it is important to have people with whom you can laugh about it all.
  8. Decent employers.
    I once blew in face the face of my boss, and he was surprisingly chilled out about it. If only that all employers were so understanding. Once, a potential employer told me they didn’t know if I could work with them because of the “duty of care” they had to the customers. That employer was a fool.
    Some people with Tourette’s might need “reasonable adjustments”. For instance, they might need extra breaks so they can tic at will, or to have their desk in a quiet corner of the office. If your boss has no problem with this, then they might be a decent employer. If your boss has a problem with this, then you might not want that job anyway.
  9. A sense of humour
    is twice as important as anything else. Again, for obvious reasons. If you didn’t laugh, you’d cry.

Why I Love Having Tourette’s

There are so many positive aspects to having Tourette’s, it’s hard to know where to begin. But I think I’ll start where I am usually: the centre of attention. Every day, and wherever I go, I turn heads. Whether it’s because I’ve just called a stranger a wanker or whether it’s because I can’t stop smashing my head against a wall, Tourette’s comes up with all sorts of creative ways to make me the centre of attention. Every day, I get stared at, laughed at and frowned at, and I just love it.

If being the centre of attention is the best thing about Tourette’s, then a close second has to be the comedy. To be honest, my Tourette’s is funnier than I am, and that’s quite an achievement, because I am hilarious. Sometimes, all I have to do is tell people I have Tourette’s and they laugh because everyone knows what a light and breezy thing it is. Mundane tasks like cooking become side-splittingly funny when I can’t stop throwing the ingredients all over the place. Shouting out the letters I have in Scrabble always jazzes up a game, as does telling strangers that they’re fuckfaces and I hate them, even when they’re not really fuckfaces, and I do not really hate them. In these instances, I feel so blessed to have Tourette’s, because let’s face it, there really isn’t a more hilarious disability.

There’s also this other upside many people don’t really know about. Basically, I can say anything I want. I can use all the profanity in the world and people can’t get mad at me, because all I have to say is that was my Tourette’s, even when it wasn’t! This is awesome, and every day I make sure to throw in a couple of fake swearing tics, just because I love offending people.

I almost forgot to mention how awesome it is that my tics change almost constantly. One day, I’ve got blurry vision from the tics in my eyes, the next my voice is hoarse from all the shouting, and the next I can’t even walk from A to B. Tourette’s is so spontaneous and that’s how I like to be too: spur of the moment and wildly unpredictable. I just love not being able to tell which tic is going to hit me next. It makes life more interesting.

Of course, some tics do cause pain. After all, it is very painful to be repeatedly punching walls, and a little tiring to be trapped in a body which will won’t stop moving. Many people would see these things as downsides. However, I like to look on the bright side: I burn so many calories through my tics that I basically don’t have to go to the gym, and, although repeatedly punching walls might hurt, pain builds character.

 

What Makes Me Tic and What Makes Me Tick?

clock

In no particular order, the following is what makes me tic:

  1. Squeamishness
    I had to have a blood test the other week, and my tics were out of control. As soon as the nurse made to take my blood, I pushed him away and shouted. Eventually, another nurse had to pin me down because I couldn’t stop squirming, and during the entire appointment, I let out my entire repertoire of vocal tics. I got the impression the other patients in the room were laughing at me, as were some of the staff – who actually asked me who had brought me there, in a way that made it sound as though they were asking who my carer was. All in all, it wasn’t a pleasant blood test. Although, I’m not too sure there’s such a thing as a pleasant blood test.
  2. OCD
    Intrusive thoughts (unwanted vivid, visual thoughts that plague the OCD mind) often trigger a bout of tics in me, but so do my checking rituals. Before I leave the house, I have to check everything is switched off/locked/unplugged/shut several times. During these times, I am ticcing like a clock.
  3. Loud noises.
    I might imitate the loud noise, say “ow”, or a rather childish “uh oh”.
  4. Total silence.
    If someone says something akin to “everyone, be totally quiet” I will be sure to make as much noise as is humanly possible. Equally, if I walking past someone’s bedroom in which I know them to be sleeping, I will again be sure to make as much noise as is humanly possible.
  5. Inebriation.
    I still drink though.
  6. Fatigue.
    I still stay up though.
  7. Someone bumping into me.
    If this happens, I will normally shout “hey” or tell them to fuck off. It’s awkward.
  8. Relaxing.
    When I am unwinding after work, it feels like I’m letting out all the tics I have been saving up throughout the day.
  9. Stress/anxiety.
    The other day, I had an on-the-spot test at work in front of the manager of my manager. Naturally, I called him a dickhead, but happily, he didn’t care, and I passed.
  10. Literally anything.
    With echolalia and echopraxia, I can feel the urge to imitate anything you say or do. For instance, if I walk past a smoker, and their lips make an ‘o’ shape as they exhale, I will often have to make the same shape.

    In no particular order, the following is what makes me tick:

  11. Coffee. 
  12. Music. 
  13. Reading articles which blow my mind and expose me to ideas I have never come across before.
  14. Writing (blogs, articles, letters, stories, anything).
  15. Long walks through the city.
  16. Long conversations with friends.
  17. A damn good short story.
  18. A damn good IPA. 
  19. Bookshops in which it feels like time stops. 
  20. Discovering a new author whose work I love. 

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.

9 Things People Ask When I Tell Them I Have Tourette’s

  1. 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
  2. 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.
  3. 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.
  4. 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. 
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.  

How To Have Tourette’s

First, 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.

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.