How to be a Student with Tourette’s

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As of a few weeks ago, I am again a student. This time, though, instead of studying modern languages, I am studying a law conversion course – an intense nine months which essentially condenses a three-year law degree into just one academic year.

Challenges abound. It’s a new campus, a new subject matter and a new cohort of classmates. It’s also an entirely new experience for me, because, as I developed Tourette’s at the age of twenty-one (at the very end of my undergraduate degree) I’ve never really been a student with Tourette’s.

Consequently, I’m starting to find out what I had always supposed: being a student with Tourette’s is tough. There are three main problematic areas:

  • Concentration (or a lack thereof). Knuckling down is what the course is all about. You’re given tonnes of new information to digest each week, and each week, you are required to read, understand, write an awful lot. Alas, as reading, understanding and writing take up a lot of brain power, this often proves difficult, especially when you’re trying with all your might to suppress your tics in class.
  • An inability to sit still. How people sit down for eight hours a day is beyond me. I am a fidget, even when I’m not ticcing. I like to move, stretch, pace. What’s more, my Tourette’s demands it.
  • An inability to stay quiet. There are few things that make me want to tic more than perfect silence. This is especially problematic in libraries and exams – in other words, the stomping ground of students.

On top of this, there is the stress of an unrelenting workload, the anxiety that a near constant barrage of exams brings, and the awkwardness of coming out as having Tourette’s to a bunch of new people,

There are a few things I’ve done to make things better though:

  • Suppressing, suppressing, suppressing. It’s hard to explain what suppressing feels like, but I would liken it to being a can of fizzy drink that’s just been shaken. It also feels a bit like holding your breath. For a release, in between classes I make sure to walk around the nearby square so I can let it all out.
  • Coming out as having Tourette’s as soon as possible to all my classmates. I did this via a group WhatsApp chat, so I wouldn’t have to tell everyone individually. I explained the reason I was twitching and making random noises in class was that I had Tourette’s Syndrome. I said I hoped it wasn’t too annoying or distracting, and mentioned that although I try to suppress as much as I can, I can’t hold them all in. Finally, I warned them that my tics are especially offensive these days.
    The support I got back from my classmates was slightly overwhelming. They told me they admired my courage for telling them, and urged me to ask them if I needed anything. This was very sweet of them, but it didn’t take much courage to tell them. It was just necessary.
  • Coming out as having Tourette’s I came out as having Tourette’s as soon as possible to all my tutors. I actually asked my personal tutor to do this so I wouldn’t have to.
  • On top of this, I use all the tricks I mentioned in my previous post: switching an offensive word half-way through to something else – i.e. switching “shit” to “sugar”; changing the offensive word to something that rhymes – i.e. switching “fuck” to “duck”, and turning vocal tics into “mental tics”.

Whatever happens, it’s going to be an interesting nine months. But as to how I am going to be a lawyer with Tourette’s, well, I’ll cross that bridge when I come to it.

Dealing with Racist Tics

I thought I’d had all the bad tics.

After all, I’ve punched windows, slapped friends, thrown a glass at my manager, shouted out the f-word, c-word and s-word, yelled “pigs” at police officers, and hit my head repeatedly against a wall.

I was wrong. It turns that things could get worse. Now, regrettably, my Tourette’s is coming out with racial slurs: an unfortunate but rare facet of coprolalia.

This is obviously awkward, to say the least. Now, it seems I’m going to be offending a lot more people, at a much deeper level.

At a loss as to what to do, I asked the internet for advice, and this is what everyone said:

  • Explain quickly to anyone who has overheard my racist tics that I have Tourette’s.
  • Wear a badge saying I have Tourette’s.
  • Try to turn the vocal tics into “mental tics”. “Mental tics” is not a medical term, it’s just what I call the silent tics that interrupt my thoughts. They feel much like an intrusive thought, but it’s made up of words instead of images.
  • Switch the tic. For example, if the racist tic is coming out, sometimes it’s possible to switch the word to something else half-way through.
  • Alternatively, if the tic has to come out, say something that rhymes with the offensive word instead.

It’s early days – I only started ticcing racial slurs a few days ago – but I’ve since found that tic-switching and finding a rhyming word really works for me.

As general rule, I find that tics come and go. I can’t wait for this one to go away, but for now I’m putting the internet’s advice into practice, and taking each tic as it comes.

What Are You Laughing At?

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The other day – I had a catch up with someone I used to know. We hadn’t seen each other in almost a year. During our meeting. I told him about what I’d been up to, the jobs I’d been working, and the books I’d been reading. I also told him about the months where my Tourette’s had been pretty bad.

“I even had trouble walking,” I said.

“How?” he asked.

“I would just keep falling over,” I said.

My former friend then took this opportunity to laugh as if not being able to walk were the funniest thing in the world.

“I’m sorry,” he said, not sounding sorry at all. “It’s just so funny.”

I was little bit confused. I didn’t remember not being able walk as being funny at all. It was, at the time, incredibly frustrating not being able to get from A to B without staggering all over the place.

But the encounter, and my acquaintance’s reaction, got me thinking. Is Tourette’s funny? In my experience, people certainly seem to think so. Sometimes, I only have to tell people I have Tourette’s and they laugh.

This can be annoying, especially when my Tourette’s is playing up. I have had, in no particular order, tics in my legs which have impaired my walking, tics in my eyes which have impaired my sight, tics in my lungs which have impaired my breathing, tics in my arms which have made me punch walls, tics in my arms which have made me punch windows, tics in my arms which have made me punch mirrors, and tics in my arms which have made me punch my face. None of these have been particularly humorous.

Most of the time, though, people don’t think of these kinds of tics when they think of Tourette’s. When they think of Tourette’s, they think of one thing: coprolalia – the compulsion to utter expletives and other socially inappropriate phrases, something which affects only 10 to 25 percent of people with Tourette’s.

Admittedly, a condition which makes you do something bizarre as swear compulsively does sound quite funny. The problem is, though, that is although it sometimes has a humorous side, coprolalia is more often than not embarrassing, isolating, and downright awkward. Indeed, it would be fair to say that most of coprolalia isn’t funny at all.

Despite all the un-funny tics Tourette’s can throw at you, despite the fact that the condition can be a cause of social isolation, unemployment, bullying, and embarrassment, if you listen out for them, you’ll hear many jokes where Tourette’s is a punchline. For some reason, it is socially acceptable to mock Tourette’s in a way that it isn’t with other disabilities.

Although laughter might be an excellent medicine, the culture of poking fun at Tourette’s has had many negative effects on those with the condition. Thanks to the innumerable Tourette’s jokes out there, the struggles people with Tourette’s go through are laughed off to such an extent that some even go so far as to say they wish they had the condition.

Ultimately, the comedy surrounding Tourette’s is due to a lack of understanding, and it’s this lack of understanding which makes having the condition far more isolating than it needs to be.

 

 

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.

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 finally meet someone else with the condition. Please do check out the video, and the other ones in the series too.

 

I Talk Shit

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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.