Pros and Cons of Having Tourette’s

Pros:

  • Sometimes, it’s funny.

Cons:

  • It hurts.
  • It’s embarrassing.
  • It’s exhausting to be ticcing all the time.
  • It can be harder to get or keep a job.
  • You probably have another condition like OCD, ADHD, autism spectrum disorder, depression, anxiety, or all five. All of these comorbid conditions can make life harder to live.
  • People laugh at people with Tourette’s.
  • People stare at people with Tourette’s.
  • People don’t really know what Tourette’s is, meaning that those with the condition have to constantly explain what it is.
  • People think Tourette’s is just about swearing, so if you’re one of the 75 – 90 percent of people with Tourette’s who don’t swear, people accuse you of not having the condition.
  • Tics which are rude or offensive can put you in danger of angering or offending someone.
  • People think people with Tourette’s are just pretending, that they are just saying what they want to say and then acting as though it was a tic.
  • People with Tourette’s have to put up with being the centre of attention.
  • Tourette’s is an incurable, chronic condition.

OCD Is A Mess

The other night I was having a drink with a friend when she used one of my favourite phrases: “I’m a bit OCD.”

Of course, the friend didn’t mean she had a mild case of obsessive compulsive disorder. Instead, she was talking about how she organised her handbag, about how particular she was about it, and how thorough she liked to be.

I let the comment slide, because, in the grand scheme of things, it didn’t really matter. But although the comment didn’t offend me, it did annoy me. My friend is an actual therapist, and she really should have known better.

The term “a bit OCD” is both frustrating and frustratingly familiar. Often, people think it’s OK to use mental health terms in everyday language, and often proclaiming themselves to be “so OCD”, “depressed”, or “having a panic attack”. This shouldn’t be a problem, but it is. Especially when terms like “OCD” come to mean something quite different from their medical meanings.

OCD is everyday language has come to mean “perfectionist”, “particular” or “organised”. But OCD in its true sense is a mess. Below is a guide to the difference between OCD and perfectionism:

  • People will OCD can ruminate over the same thing for hours, weeks, months, or years. These thoughts can centre on anything and be immensely frustrating. Perfectionists don’t do this.
  • People with OCD experience excessive vivid, intrusive thoughts often depicting frightening situations which will never happen. Perfectionists don’t have this.
  • People with OCD can sometimes be hoarders. Their homes will be full of things they do not need and yet cannot let go of. Perfectionists don’t have this.
  • OCD can cause those with it to act out pointless, lengthy rituals by which they check that everything is safe (that they didn’t leave the cooker on, that when they hit that bump in the road it wasn’t actually a person, that the taps aren’t still running and the door really is shut). The person with OCD will know that these time-consuming rituals are irrational, however, they have to act upon them even if they cause them distress. Perfectionists, on the other hand, like things to be in straight lines, in the right order, so they are neat and tidy and look nice.
  • OCD can lead to severe depression. Perfectionism can lead to severe tidiness.
  • OCD is a mental illness which can ruin your life. Perfectionism is a personality trait to put on your CV or covering letter.

10 Facts About Tourette’s

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  1. Tourette’s make people tic, not tick.
    Tics are involuntary movements, sounds, words or sentences. Ticks are insects which carry diseases.
  2. Tics are, generally speaking, not indicative of what the person with Tourette’s is thinking.
    Tics are random. So, someone with Tourette’s tics “wanker” in your general direction, don’t take it personally.
  3. Tics are like the moon. They wax and wane.
    People with Tourette’s will go through periods of time where their tics are not very noticeable, and periods of time where they are very noticeable.
  4. Tourette’s normally starts in childhood.
    The usual age for Tourette’s to kick in is 6 or 7. (I first started ticcing age 21, which isn’t the norm.)
  5. Tourette’s is not a mental illness.
    It’s a neurological one.
  6. Most people with Tourette’s Syndrome have something else too.
    Common comorbidities are OCD, ADHD and autism, but people with Tourette’s often have depression and anxiety too. All this means that when you have Tourette’s, tics can often be the least of your problems.
  7. Most people with Tourette’s do not swear.
    According to one study, only 10 to 15 percent do.
  8. Tourette’s is incurable.
    Although there is medication and therapy which can help people manage their tics better, as a general rule, tics don’t ever just go away.
  9. About 300,000 people in the UK are diagnosed of Tourette’s.
    Meaning that it’s not that common, not that rare.
  10. Tourette’s does not affect intelligence.
    So, if you see someone with Tourette’s, there’s no need to patronise them. (This happens a lot.)

 

 

What Makes Me Tic and What Makes Me Tick?

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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

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.  

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.