Tourette – Page 2 – How To Have Tourette's

Most People Don’t Swear but I Do

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Whenever I meet new people and I have to explain that I have Tourette’s, I make sure to explain that I am an anomaly.

Firstly, I’m a woman and Tourette’s normally affects males.

Secondly, I got Tourette’s in my twenties and most people get it when they are aged six to seven.

Thirdly, most people with Tourette’s don’t experience coprolalia – the compulsion to swear – and I sure as hell do.

In this sense, I am a walking, talking, yelling stereotype of the condition, because most people with the condition just equate Tourette’s with yelling out curse words. And I yell out curse words. A lot.

In some ways, I feel I’m letting the Tourette’s “community” down (hate that word – it’s not like we’re all in the same WhatsApp group or anything) for being so sweary. A lot of people with the condition have it quite badly and don’t ever utter an expletive involuntarily, and they have to live their lives explains that only 10 to 25 percent of Touretters swear involuntarily.

It’s a statistic I make sure to repeat as often as I can, because I don’t want to be purporting the myth that all Touretters swear involuntarily as I walk around swearing involuntarily.

In some ways, because I fit the media stereotype of Tourette’s, my life is easier. I don’t have to explain what I’m doing because my Tourettic symptoms align with people’s preconceptions. Instead, I just choose too, deciding to explain Tourette’s as thoroughly as I can, from the blissfully ignorant strangers I meet in bars to the people “whose cousin has Tourette’s too”. (Seriously, I’ve heard that sentence so much, I’ve come to believe everyone has a cousin with Tourette’s.)

I guess it’s my way of “doing my bit”. I’ve got this thing, and I’ve got it forever. I might as well tell the world about it.

No, Tourette’s is Not Necessarily Indicative of a Touretter’s Emotional State

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This. Is. So. Annoying.

So often, whenever I’m ticcing, people will ask me/automatically assume that I’m ticcing because I’m:

Anxious
Stressed
Somehow distressed

In some ways, this is a natural assumption, as if I am yelling “FUCK!”, “I HATE YOU AND YOUR EYEBROWS!” or “MOVE IT, LADY!”, it would be natural to assume I am not in the best of moods.

And it cues a barrage of questions: “What’s up?”, “You OK?”, “What’s the matter?”.

Yes, they’re just being nice and concerned and I’m just being grumpy about it, but nevertheless…This. Is. So. Annoying.

People with Tourette’s tic every day. They tic when they’re happy, sad, jealous, envious, excited, relaxing, stressing, washing, sleeping, eating. It’s the condition that doesn’t stop.

Yes, certain people with Tourette’s find that certain moods will cause them to tic more frequently than normal.

For instance, sometimes, if I’m tired or relaxing, I’ll find myself letting my tics loose. Occasionally, when I’m overwhelmed by a busy environment, I’ll find myself ticcing a little more. But that’s about it. Mostly, whenever I’m ticcing, I’m, well, fine? I can be in the best of moods, at peace with the world, on top of the world, and be ticcing like a clock.

Tourette’s is so fucking complicated. No one really knows what causes it. No one really knows what makes people tic. No one really knows why the medications used to treat it actually work.

Ticcing isn’t indicative of someone’s emotional state. All it is indicative of is that they have Tourette’s. So, if you ask me when I’m ticcing when I’m ticcing, I’ll say it’s because I have Tourette’s. It’s as simple, or, rather, as complicated, as that.

Actually Autistic

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I’m autistic, actually. This not a sentence I go around telling anyone and everyone, but what the hell, it’s out there now.

My silence was for a number of reasons.

Firstly, a silly part of me thinks I’m too high-functioning to deserve the diagnosis. A spectrum disorder, some people need a lot more care and support than I do to make their way through life. I’m largely independent, can hold down a job and relationship, and, having lovely family and friends, am not half as isolated as some people on the spectrum.

Secondly, people’s perceptions of autism are, well, usually wrong. So often, the stereotype is of a male maths whizz who is socially awkward, aloof. I already have to battle with the stereotypes of Tourette’s. To battle with more stereotypes seems a bit too much of an effort I just don’t need.

Thirdly, I don’t want autism to define me. It makes me who I am, of course. But I don’t want to be labelled as Alice the autistic woman. I’m just a person who happens to be on the spectrum. My personality is bigger than the diagnostic criteria for ASD.

But I am, most definitely autistic. I have the “right” comorbidities: Tourette’s, OCD, depression. I get obsessively passionate about subjects: music mostly, but also ads and TV shows. I take things literally, hating metaphors such as “it’s no skin off my nose”, because I literally think of skin coming off a nose. I also can get overwhelmed by loud sounds and crowds, have an excellent memory and an eye-for-detail.

One doctor said he didn’t believe I had autism because I was previously a bartender: a job he deemed impossible for autistic people to do.

That’s crap, of course. An excellent memory for cocktail specs is a boon in the bartending industry, and interacting with drunk people is the easiest thing in the world (hint: you can say anything).

So, I’m autistic, and I’m going to be talking about it more from now on. Because, if every high-functioning female on the spectrum were to remain silent as I have been, then society’s stereotypes will never change, and that, of course, would be a terrible shame.

Annoying and Nice Things People Do Around People Who Have Tourette’s

The Annoying

Stare
Staring is something you have to get used to when you have Tourette’s, but if you’re curious as to what I’m doing, just ask me what’s up, and I’ll be happy to explain. Don’t just stare.
Usher their children away
Tourette’s doesn’t mean you’re drunk, high or crazy. Tourette’s does not harm children. Do not usher them away.
Tell me to calm down
Telling a person with Tourette’s to calm down is like telling a depressed person to cheer up. You just don’t do it.
Imitate the tics
Just rude. And annoying. And makes me feel self-conscious.
Ignore the tics so much you that ignore the person
So often when I am ticcing a lot, people ignore me entirely, not including me in the conversation. Just because I’m yelling “boobs” all the time doesn’t mean I don’t have anything valuable to contribute.

The Nice

Ask questions
I’m happy to answer anyone’s questions on Tourette’s. I’ve become a bit of a walking Tourette’s encyclopaedia. I might as well be. This thing is chronic and incurable: I’m having it forever.
Open up about their own health struggles
This is just so sweet and happens quite often. Once, I spoke to someone about my Tourette’s and she immediately opened up about her deafness. It breaks the ice.
Laugh with me
My tics can be hilarious. Laugh with me.
Treat me no differently
I love it when people don’t patronise, point, or stare at me, when they just treat me as a person who tics, because, guess what? I’m just a person who tics.
Massage my shoulders
Why this calms me down, I have no idea. But it works and I love it. To be fair, it’d be a bit odd if a random person off the street started massaging my shoulders, but friends and family? Sure.

Nine-Nine-Nine

ambulance

I was outside on a freezing night when my legs gave way.

With my Tourette’s, my knees do buckle sometimes and before I know it, I’m on the ground. Normally, I get right back up again, brush the mud off my knees, and carry on in much the same way as before.

This time, though, things were a little different. Unable to get back up again, my body began shaking and jerking. From the outside, it must have looked like I was either a) having some kind of seizure, or b) was blind drunk and collapsed on the floor.

Of course, what I was having was a tic attack: a wave of near-constant and uncontrollable tics.

Security were quick to come over and call an ambulance. When they arrived, over forty-five minutes had passed since I had been on the ground convulsing.

The first thing I heard paramedic say was, “This is not a seizure, I’ve seen a seizure.”

In response, what I didn’t say was: This isn’t a seizure in the epileptic sense. This is something called a tic seizure, a tic attack, a tic fit. It is a stream of intense, debilitating tics. There is a lack of literature on the subject so you may not be aware of the phenomenon. The episodes can last for hours and are exhausting.

Instead, what I said was: “FUCK!” “GET YOUR HANDS OFF ME!” “PISS HEAD!”.

“Come on, stop it,” the paramedic said as he hauled me to my feet and my legs buckled for the umpteenth time.

Stop it. Just stop it. The times people have told me to just stop it, to just shut up, to just “think of the bad word in my head instead of saying it out loud”.

Funnily enough, Tourette’s doesn’t work that way. I continued to shake and groan whilst the paramedics started to drag me home.

“You can walk, I know you can walk,” the paramedic said.

I couldn’t walk. Well, I could. But for like two steps before my legs gave way again.

The five-minute journey home took God knows how long.

It was an upsetting experience, to say the least. The lack of empathy and understanding and knowledge was quite frankly shocking.

“You could have been kinder,” I said to them, as we crossed the threshold to my flat, by which time I had regained some of my ability to talk. Perhaps it was rude of me to say to two extremely tired, over-worked and under-paid paramedics, but it was true: they could have been kinder.

“We got you home,” was their response.

Yes, they had got me home, but they had literally dragged me instead of using the wheelchair in the back of their ambulance.

Yes, they had got me home, but now all I wanted to do was cry all night.

Yes, they had got me home, but two strangers off the street would have probably been nicer than they had been.

Now, if someone ever suggests calling nine-nine-nine for one of my tic attacks, I know what to do: snatch the phone off them and throw it into the river.

The reason being: the awareness and understanding just isn’t there. People just don’t get Tourette’s, medics included.

No, You Don’t Have Tourette’s

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Sharon Osbourne, a 66-year-old TV personality has reportedly said “Sometimes I think I have Tourette’s without too much swearing.”

I have never met Sharon Osbourne, but I am willing to bet she doesn’t have Tourette’s.

First things first, you don’t have to swear to have Tourette’s. Most people – between 75 and 90 percent of people with Tourette’s – don’t experience coprolalia.

Secondly, Sharon Osborne doesn’t have Tourette’s. What she has is a condition called “verbal diarrhoea” – an affliction that causes people to talk utter crap.

Thirdly, everyone needs to stop using Tourette’s as an excuse for bad language.

Bad language and Tourette’s are not synonymous.

I have had numerous people tell me they think they or their boyfriend/partner/cat has Tourette’s because they swear so much. But swearing is a small part of an incredibly complicated condition – a condition which can be the source of physical pain, isolation, and unemployment, a condition which causes much more motor tics than it does vocal, a condition which has been ridiculed by celebrities and non-celebrities for far too long.

It’s time to stop using Tourette’s as an excuse for poor behaviour. If you really think you have Tourette’s – if your body and voice are doing things out of your control – then see your GP. If you think you swear a bit too much, then maybe just chill out.

Tic Attacks

Tic attacks, tic fits, tic status, whatever you want to call it, they suck in a serious way. Imagine being unable to control your body or voice for hours on end. Imagine hitting your head against the wall, grunting, throwing objects, breaking stuff, jerking your arms, constantly writhing and shaking, falling to the floor when you try to walk, not being able to string a sentence together without your Tourette’s interrupting it with all sorts of random expletives.

I’m in week three of a job at an advertising agency. I love the place. They couldn’t be more supportive of my Tourette’s. They let me go home early if my tics are too disabling. They send me in a taxi if the Tube is too hard to handle. They let me take more frequent breaks. They have let everyone in the building I know about my condition so no one is alarmed or surprised when I suddenly let out a profanity.

The problem is my Tourette’s is bad at this job. I’ve had three tic attacks in three weeks which is unheard of for me. The problem is I don’t want to be seen as the sick, disabled employee who can’t handle a 9 to 5 workday like everyone else. I want to be well, to work consistently, to knuckle down like everyone else. The problem is I don’t want to have Tourette’s, and yet I do, there’s no cure, the treatments I have had have only alleviated some of my symptoms but by no means all of them.

It’s a big problem – one that, as of yet, can’t be resolved. All I can do now is be thankful that my employers are so understanding, be grateful that I have regular access to a neurologist, and be happy that my friends and family are supporting me through my Tourette’s – whatever it brings.