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.

Coming Out

One of the hardest things about having Tourette’s is knowing when to tell people I have it.

Occasionally, it’s obvious that I need to explain, like that time a Tesco security man asked me why on earth I decided to kick his lovely wall at two in the morning. “I have Tourette’s,” I say. “I do things without meaning to.” Upon receipt of his blank stare, I explain further. “It’s a neurological thing. A condition. I can’t help it.” But, as blankness continues to emanate from him, I do what I normally do in these situations, which is walk away at an incredibly brisk pace.

Most of the time, though, it’s just really hard to know who to tell. Do I tell the people on the tube, to whom I have just sworn at very loudly? Do I tell the lady passing me in the street, the lady who let out a sarcastic “charming!” after I let out an involuntary “fuck!”? Do I tell the waiter serving me why I have just meowed very convincingly – so convincingly that I overhear his colleague asking him if there’s a cat somewhere?

The problem is, whenever I do tell people I have Tourette’s, the conversation doesn’t always go too well. Sometimes, the stereotypes surrounding Tourette’s prevent people from understanding exactly what I mean. Once, my Tourette’s was making arms and legs shake. “Are you cold?” an acquaintance asks. “No, I have Tourette’s,” I say. She didn’t respond, probably because my explanation must have seemed like a total non sequitur. Most people associate Tourette’s with saying random stuff, not doing random stuff.

Currently, I am doing some bar work meaning I interact with hundreds of new people every week, only about three of whom I have explained my Tourette’s to. The bar is loud, which masks most of my vocal tics. The motor tics can be interesting though. I often jerk my head to ceiling as I am pouring a pint, meaning that the glass overflows and some customers get as much beer as is humanly possible. This is a plus for the customers of course. It’s value for money. However, if I were to explain to everyone who received a very generous glass-full why they have received a very generous glass-full, it would get pretty boring pretty quickly, and ultimately be of little to no interest to people who just really want their beer, and not a long conversation about the vagaries of my basal ganglia.

Doing the BBC short video, “Things Not To Say To People With Tourette’s” has helped a bit. I was only diagnosed one-and-a-half years ago, meaning that people like cousins, aunts, and friends overseas who have never needed to know about my Tourette’s now know about my Tourette’s.

However, every day, I tic in front of people who decide to stare at me afterwards. It’s impractical to tell them all that I have Tourette’s, so I don’t. But I know that I should be telling some of them why I do what I do. If only there were a simple way to figure out who they are…

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.

 

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.

 

Tourette’s Is Stopping Me Walking

Tequila_shot.jpg

After a couple shots of tequila, it’s normal to have a bit of difficultly walking. You might sway a little. Maybe straight lines are difficult. Or else, you might bump into something because your drunken brain has decided to be an inattentive buffoon.

The other week, though, I got the impression that my trouble walking had something less to do with tequila and something more to do with Tourette’s. I was walking to the bus stop after work, and every other step, my right knee kept buckling. Taking an Uber felt like giving up, and so I just carried on walking in my new weird way, tripping, stumbling, and stopping altogether every other step. At one point, I decided that if I couldn’t walk, maybe I could run. But I couldn’t. My legs just wouldn’t let me. On the bus, I stubbornly took my shaky legs up to the top deck, and when I alighted, my usual ten-minute walk home took me twice that.

Up until then, my Tourette’s didn’t seem to realise that my legs existed. My motor tics mainly manifested in my head, shoulders, arms, and torso. Below that, I was tic-free. But unfortunately, in the weeks that followed, the tics in my legs got worse and I found myself walking in increasingly bizarre ways. Sometimes, my legs would kick out in a way that apparently looked like a scene from Monty Python. Other times, I would kick walls, fridges and cupboards, the muscles in my calf would tense of their own accord, and at the end of the day, my legs would ache from the strain.

Tourette’s feels like many things, but in instances like this, it really does feel like you’re a puppet being controlled by a malicious five-year-old child. The child wants to embarrass you, make people stare at you, make you do things you really don’t want to do, and cause you harm. It’s frustrating. Frustrating not only because one week you can walk just fine and the next you can’t, but also because this facet of Tourette’s isn’t well known at all. Many tics are really funny. But when you can’t walk, it’s kind of hard to find the humour.

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. 

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