Tag: Tourette

More Questions People Ask People with Tourette’s

  • Why do people with Tourette’s swear and not tic “nice” words?

Firstly, only 10 to 25 percent of people with Tourette’s experience coprolalia. Secondly, I tic lots of nice words (“Lemon”, “Botticelli”, “woo hoo”). Thirdly, no one really knows why certain words become tics and not others.

  • What would happen if you didn’t know any swear words?

If, hypothetically, you didn’t know any swear words, then you would tic other rude things. For instance, yelling “you’re fat” to someone who’s chubby, “get hair” to someone who’s bald, or “I hate you” to someone who may or may not inspire in you such a feeling.

  • Have you ever got into trouble because of your Tourette’s?

Sometimes people ask me what I’m doing in a rather irritated way, but I just explain I have Tourette’s and then they’ve always been fine with it. I think it helps to be a woman in these circumstances.

  • How do you sleep?

My tics vastly reduce when I’m asleep, so I have no problems with insomnia due to Tourette’s. However, getting to sleep can sometimes be tough. Often, I’ll tic while I’m half-asleep and wake myself up. This is annoying.

  • Is there any medication for it?

Yes – antipsychotics are used even though psychosis has nothing to do with Tourette’s. These aren’t for everyone as many people suffer quite badly with the side-effects which are sometimes worse than the tics themselves. Also, the drugs don’t work for everyone. Unfortunately, there is no cure for this condition and even if medication is helpful for some people, it’s not going to get rid of the tics entirely.

  • What triggered you getting Tourette’s?

When people ask this, I assume they think Tourette’s is like a mental illness caused by a stressful life event. This isn’t really the case. Tourette’s is neurological – it happens because there is something wrong with your basal ganglia. It’s often inherited but not always, and is more likely to occur if you have things like ADHD and OCD running in your family. As such, nothing triggered my Tourette’s. It just happened.

  • How does a tic feel?

Like this. But also like you’re a puppet being controlled by some hyperactive and rude five-year old child, and also a bit like you’re possessed.

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.

 

 

Tourette’s Syndrome Is Like The Moon

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I haven’t written here in a while because this blog is called “How To Have Tourette’s”, and for the past few weeks, it’s felt like I haven’t really had Tourette’s.

Sure, I’ve been ticcing every day, but 90 percent of the time, the tics have been subtle. I’ve been coughing, clearing my throat, blinking. As everyone does all these things anyway, I haven’t brought a lot of attention to myself.

The other 10 percent of the time are when I am in particularly triggering situations: namely bustling, noisy environments. Yesterday, I made the mistake of walking through London’s West End. Unfortunately, I shouted “HEY” at a small, innocent tourist girl who crossed my path. Instead of doing what I should have done, which was stop and explain that I wasn’t incredibly rude person just an incredibly tourettic one – I blushed and walked away at the briskest pace possible.

Other times, I tic when I am incredibly stressed. I had a bit of an attack the other week. I was nervous the whole day at my new job, and in my lunch break I sort of exploded. All my tics, from my head to my toe, happened at once. It was a stressful experience.

For the most part, though, I haven’t been ticcing and I’ve been making the most of it. I can now go into the spaces that aren’t meant for people with Tourette’s. I can browse in quiet bookshops, go to the cinema, and sit down in fancy restaurants. If I wanted to, I could probably go to the library, the theatre or a meditation class. I’ve even got a new office job and, even though everyone is pretty quiet there, my Tourette’s has caused precisely zero problems.

This is all in the normal order of things, because Tourette’s is like the moon: it waxes and wanes. Right now, I am on a wane. One day – be it in a week or a month or a year – I’ll be on a wax again, and once again, it’ll be difficult. For now, though, I’m just grateful for some much-needed respite. Finally, after months of near-constant ticcing, I can sit and just be still.

Bad Language

Yesterday, I read an article about a concert pianist with Tourette’s. The article recounted how the man, a former child prodigy, has faced a lifetime of rejection from orchestras, something which he attributes to his potential employers being unwilling to deal with his condition.

The article sounded entirely plausible. No matter how talented or intelligent you are, it can be incredibly hard to find employment when you have Tourette’s. In my case, one employer told me that they didn’t think they could hire me because of the “duty of care” they had to the customer. Situations like these are all-too-common, and the article shed some light on to what people with Tourette’s have to put up with, and how hard cases of discrimination can be to prove.

Even though overall it was a positive article, I did find it unfortunate when the author decided to write that, eventually, the man “conquered” his Tourette’s. For me, this was an inaccurate and somewhat bizarre choice of vocabulary.

From the sounds of it, this man was one of those with Tourette’s who find that their symptoms alleviate with age. However, even if this was the case, the man wasn’t “conquering” anything. Tourette’s is a chronic, incurable condition. It can’t be “conquered”.

To say that the man conquered his Tourette’s is to say a) you can win against Tourette’s if you try hard enough, b) anyone with Tourette’s can “fight” the condition c) those whose symptoms persist despite their age are losing somehow.

Basically, it’s just not a great thing to say.

The problem is, people often use bellicose language when describing people’s relationship with their medical conditions. We often hear of people’s “battle” with a disease, they “fight for their life”, “struggle”, “conquer”, but, ultimately, “lose”.

I’m not sure this kind of language is helpful for anyone. Fighting Tourette’s isn’t an advisable activity, because we simply don’t know enough about Tourette’s to know how to fight it. We don’t know what causes it and what doesn’t, why some medications work for some and not others, why some people grow out of their symptoms and why some people don’t.

It can be a really hard thing to do, but when you have Tourette’s, it’s important to accept that you have Tourette’s, to go with its ups and downs, and to realise that raging against it will get you precisely nowhere.

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.

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.)