Eff my Tourette’s

Tourette’s is a condition that people never used to know anything about and now, thanks to various (often quite low-brow, shock entertainment) documentaries, there’s more awareness – but it usually means misunderstandings.

Usually people laugh at my tics. They laugh more, or politely pretend not to, when I say that I have Tourette’s, or immediately respond by swearing at me (and then laughing) because to most people, Tourette’s means uncontrolled swearing.

For the record, if I swear at you, it’s because I meant it – and I do it a lot, but it’s nothing to do with my Tourette’s, it’s just because I think you’re a dick.

Tourette’s means tics; it means not having any control over verbal or physical tics which can manifest in a wide range of ways. My own particular tics have changed many times over the years, which is generally the standard pattern, and the first I ever had that I associated with Tourette’s was a strange popping sound I made in my throat in my late teens; I was a fidgety child, never sat still, often hummed or popped my lips, and the neurologist I saw in my late twenties who finally diagnosed my Tourette’s (after I’d repeatedly twitched my head away from him trying to examine my eyes, stroked his hair because I couldn’t not do it, said “Meep Meep!” and done jazz hands so often I looked like a sad, drunken Fame dropout) said that those young signs were early indicators of the condition and not, as I’d always thought, just me being a giant pain in the arse.

Tourette’s is also much more than just tics – there are a great many associated conditions which often get diagnosed separately (I was diagnosed with an anxiety disorder and OCD before I got my Tourette’s diagnosis, when in fact those are part of it)

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Currently, my tics are exhausting. My Tourette’s, as with many people, has got worse over time, and if I’m anxious or stressed it’s worse – and a fun additional condition that most people who have Tourette’s have is clinical anxiety, so, yeah…it means that I’m not great at sleeping at night, and the more tired I am the worse it is, and again the condition feeds into itself to make the symptoms worse. I’m still doing jazz hands, or a painful click and point or clap that spasms my arms and hands, or slapping/punching myself in the head, or a fun combination of all of those, while announcing “beep boop!” in a very cheerful way.

Two of the worse – but funniest – examples of my tics getting in the way are often repeated as anecdotes to friends because I find with most things in my life that making light of issues makes them easier to live with. One is from a job interview shortly after I graduated from university (which had been exhausting enough in itself) the two people interviewing me knew about my Tourette’s, as I’d been working for the company for a while and was interviewing for a promotion; they had never witnessed it themselves, but had discussed it with my manager before the interview. In the middle of the meeting, sitting with cups of tea and chatting quite informally, I began to relax and that gave my tics freedom to take over and I shouted “Foot!” and whipped my tea-cup over my shoulder, dumping the contents behind me, and then slapped it back into my lap (leaving a bruise, for further discomfort!) and there was a long pause while everyone processed what had just happened – then the interview carried on as if nothing had happened, with nobody making reference to the puddle of tea on the floor or me rubbing at my bruised thigh!

Another is from another job, a number of years later, when I used to collect a colleague on my way to the office and drive him to work. Again I had told the boss that I had Tourette’s but, like many of us, I have learned to ‘hold in’ my tics when I’m around a lot of people, and it all comes out in the car when I’m alone. Despite not being alone in the car I was very ticky this particular day, and kept clapping, meeping, clicking and whistling, and was about to explain to my confused colleague what was happening when a particularly enthusiastic combination of jazz hands and a slap to the face saw me hooking a finger under the frame of my glasses and flinging them across the car into the passenger foot-well. Not great, considering I was in the outside lane of a duel carriageway doing possibly a little over the limit at the time, and I’m as blind as a bat without them.

“So, I have Tourette’s, which is why I’m twitchy, and I’m going to need you to pass those back so we don’t die in a hideous car crash” I said. Then whistled, and slapped his leg. “Sorry.”

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Back to the swearing thing; we don’t all do it. There are times I wish I did, so I could get away with calling people names to their face more often, but I don’t have that condition; it’s an additional condition that fewer than 10% of people with Tourette’s have, called coprolalia, and despite people with Tourette’s appearing on a number of documentaries now, which I always watch, I’ve yet to see any mention in them of coprolalia, or anyone who has Tourette’s being included in a documentary who doesn’t have the coprolalia – which just continues the belief everyone has that Tourette’s means saying “Fuck” a lot. I do say fuck a lot, but that’s because I’m a bit common, and nothing to do with my neurological condition.

I have a cousin with Tourette’s – he does have coprolalia too, and oddly enough the same birthday as me. That’s got nothing to do with it either. Having coprolalia also doesn’t mean you have Tourette’s, as the condition can be caused by other neurological issues.

My Tourette’s exhausts me, in part from the constant vigilance when I’m out and about so I’m not shouting “Beep boop!” at people in the street or accidentally slapping strangers with my clicking jazz hands, but also from the strain the tics take on my body when I get behind closed doors and let it all go. The ‘tell’ I have that there are tics coming is a strange shiver at the base of my skull, the kind of feeling that you get when you need to stretch then do a really good one, and there are times when I do one big tic and the feeling is satisfied, and goes away – but often the tic wasn’t ‘right’ and has to be repeated, which gets more and more painful (particularly when the tic is punching myself in the throat) – and when I say it has to be repeated I don’t mean that I’m willingly slapping myself to get rid of a feeling, but that I have absolutely no control over my body when these things are happening, over and over again, causing bruising and muscle strains and cramps.

It’s been a game to people over the years to do things that set my tics off, because they find it funny, and there are times when I don’t mind that, when it’s affectionate, when close friends or loved ones tease me about me wrinkling my nose like a rabbit, mention of which immediately makes me do it (as does anyone touching their nose or referencing their nose near me, it makes mine feel tickly) but in one previous job the manager told the whole team about this quirk, and it just never stopped, all day, every day, the people I was supposed to be senior to making me “do the nose thing” to distract me from my work all day, making my nose bleed because I was rubbing at it so much – but I couldn’t not rub at it when it was being referenced all the time.

The tics also make me lose my train of thought and, when it’s a bad day, make me woolly headed and distracted, and that’s a pain in the arse when you’re in a disciplinary meeting with a member of your staff who keeps “making you do the nose thing” when you’re trying to talk to them about their lack of respect, but you keep doing the nose thing and can’t remember where you were, and just come over unprofessional and hurt yourself.

I’ve written about my Tourette’s before – probably with the same comedy anecdotes – on other blogs and for publications, and everyone close to me knows that I have it, and those who love me can get away with laughing with me about it on the days I’m ok with it, or copying my ridiculous jazz hands and the phrases I shout out, but someone who didn’t know me well laughing would still hurt, and being mimicked by a group of teenagers at a bus stop never feels good.

But I’m writing about it again today because today it’s making me cross. Today I punched myself in the nose, which made it bleed. Today I am exhausted from looking after a poorly child and haven’t had enough sleep, and am furious that my own body is betraying me in a way that is so painful and so draining when I’m already so tired, I have bruises on my leg from slapping it, I have put my shoulder out doing click-clap-jazz hands, and my five year old son keeps slapping himself in the head to “Be like Mummy” even though he knows I don’t do it on purpose, but he doesn’t really know how else to sympathise.

Sometimes it’s fun. I wish the verbal tic that made me shout “gerbil!” had stuck around longer, and jazz hands can, at times, just make me seem fabulous – but today it’s shit. It’s totally, totally shit, and it hurts, and I’m too tired to reign it in, and I just want to lie down, but if I do that I won’t feel rested because I tic all night in my sleep too, and am currently just waking up aching all over and feeling more weary than before I went to bed.

So far I’ve not been medicated specifically for Tourette’s – I have anti-anxiety medication which helps to stop the crazy that runs away with my thoughts, and enables me to rest more, and I have had sleeping tablets when it’s been really bad before, but that’s as far as we’ve ever gone, but in recent months the Tourette’s has become more and more pronounced, and I’m beginning to think I’ll need to explore other options with my doctor, which means having to go and ‘let it all out’ in front of someone else to ‘prove’ there’s an issue when, in all the time I’ve known my GP, I’ve managed to restrain my tics in front of him, because that’s what we do.

Now that I’ve written all of this about my Tourette’s I am ticking like mad, because thinking about it or talking about it makes it so much worse, so I’m going to go and sit in the dark somewhere. If you want to know more about Tourette’s, visit Tourette’s Action who have some great resources, and if you’re making any documentaries just casually slip in there the ACTUAL NAME OF THE CONDITION YOU’RE SHOWING. Just a thought.

 

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Also, don’t buy me this; I won’t laugh. I will call you a cunt.

 

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5 thoughts on “Eff my Tourette’s

  1. Amanda says:

    I hear you Lizzy and respect your courage in sharing your personal experience of Tourette’s and how the condition impacts you physically, emotionally and socially.

    • Lizzie says:

      Thank you my lovely – I’m glad I’m back too 😊 even if back does mean ranting! The t shirt annoys me even more than the documentaries!

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