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.

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.)

 

 

Everybody Looks At Me

I go to the supermarket and everybody looks at me. I get on the Tube and everybody looks at me. I get off the Tube and everybody looks at me. Everybody looks at me.

This might be because everybody thinks I’m supremely beautiful. However, it’s more probable that everybody is wondering what the hell I’m doing. When I’m out and about, I talk to myself, swear to myself, and hit myself. I click my tongue, smack my lips, blow kisses, and shout out the most random words (the Roman Emperor Caligula got a high-volume mention yesterday).

It’s no wonder people stare. Tourette’s is an odd thing, and people like to stare at odd things. Unfortunately for me, my tics are often at their oddest and loudest in public. Also unfortunately for me, a lot of people don’t get what Tourette’s is. This means that I can be slapping my face or cursing at a chicken salad and many people will assume that I am doing this voluntarily. However, all my tics are things I do not want to do. They are automatic, involuntary, meaningless.

Although staring might also be automatic and involuntary, staring at someone certainly isn’t meaningless. Staring at someone is telling them that they look odd, that they are behaving differently, that they are an anomaly.

Being an anomaly at the centre of attention can be a pretty embarrassing place to be. It certainly was at the start of my Tourette’s. By now though, I’m so used to saying all manner of weird things in front of large crowds that I’m pretty used to the unwanted attention. Happily, soon after developing Tourette’s, I came to accept the stares by either a) ignoring them (you can get used to anything), b) staring back (this makes people fantastically uncomfortable), or c) saying hi to anyone who is staring (this one really freaks people out).

It also helps me to see the big picture. I live in London, a city of a gazillion odd people, me included. Every day, we all walk past anomalies like me talking to themselves, swearing to themselves, and hitting themselves. We turn to them, we look at them, and we stare at them. Then what we do is look away, forget that they ever existed and move on with our lives.

At the end of the day, it doesn’t really matter if you shout “Caligula!” when you cross the road. In this city of nearly nine million people, everybody might be looking at me, but everybody is just a little bit too busy to care.

A Tourette’s Survival Guide

  1. A sense of humour.
    For obvious reasons.
  2. Social dexterity.
    Sometimes, Tourette’s is going to land you in the soup. You’re going to shout something mean in the vague direction of someone who doesn’t want to be called something mean. You’re going to make noise in places where it’s frowned upon to make noise. You’re going to accidentally tear down a load of decorations.
    In these situations, it’s important to know when it’s appropriate to explain your condition and how exactly to do so. This is very tricky.
  3. The ability to leg it at any given moment.
    Even if you have explained why you’ve done what you’ve done in painstaking detail, even if you have used the words “can’t help it”, “condition”, “neurological” over and over again, there will be some people who are pissed off that you a) have just told them to piss off, b) just broken their prized possession, or c) just interrupted their production of Hamlet with a grammatically unsound sentence chockfull of surprisingly creative expletives.
    In these instances, run.
  4. The ability to chill out.
    Other people’s attitudes towards Tourette’s can be very annoying. Some people do not understand why people with the condition cannot just shut up. Some people dismiss the condition as literally not existing. Some just treat the condition as a punchline.
    All these attitudes can and will be angering. However, rage is very energy-consuming. It’s therefore important to realise that you cannot change everyone else’s opinion, and that what other people think is beyond your control. In other words, it’s important to chill out.
  5. A propensity towards not being embarrassed even in objectively embarrassing situations.
    For most people, blowing strangers kisses, shouting out “tit” in the middle of the street, and telling cashiers that they’re twats is mortifying. It’s helpful to get over this embarrassment quickly, as it’s inadvisable to live life constantly blushing.
  6. Flatmates and neighbours unperturbed by random eruptions of sound.
    Whenever it’s late and perfectly silent, my Tourette’s invariably decides to shout. Right outside their rooms, too. Right outside where they are sleeping.
  7. Good friends.
    Having Tourette’s is an excellent filtering process. People who can’t handle you having the condition would most probably be bad friends. People who couldn’t care less about you having the conditions would most probably be good friends. Life with Tourette’s can be a little tricky, so it is important to have people with whom you can laugh about it all.
  8. Decent employers.
    I once blew in face the face of my boss, and he was surprisingly chilled out about it. If only that all employers were so understanding. Once, a potential employer told me they didn’t know if I could work with them because of the “duty of care” they had to the customers. That employer was a fool.
    Some people with Tourette’s might need “reasonable adjustments”. For instance, they might need extra breaks so they can tic at will, or to have their desk in a quiet corner of the office. If your boss has no problem with this, then they might be a decent employer. If your boss has a problem with this, then you might not want that job anyway.
  9. A sense of humour
    is twice as important as anything else. Again, for obvious reasons. If you didn’t laugh, you’d cry.