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

TS-iceberg

  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.

Coming Out

One of the hardest things about having Tourette’s is knowing when to tell people I have it.

Occasionally, it’s obvious that I need to explain, like that time a Tesco security man asked me why on earth I decided to kick his lovely wall at two in the morning. “I have Tourette’s,” I say. “I do things without meaning to.” Upon receipt of his blank stare, I explain further. “It’s a neurological thing. A condition. I can’t help it.” But, as blankness continues to emanate from him, I do what I normally do in these situations, which is walk away at an incredibly brisk pace.

Most of the time, though, it’s just really hard to know who to tell. Do I tell the people on the tube, to whom I have just sworn at very loudly? Do I tell the lady passing me in the street, the lady who let out a sarcastic “charming!” after I let out an involuntary “fuck!”? Do I tell the waiter serving me why I have just meowed very convincingly – so convincingly that I overhear his colleague asking him if there’s a cat somewhere?

The problem is, whenever I do tell people I have Tourette’s, the conversation doesn’t always go too well. Sometimes, the stereotypes surrounding Tourette’s prevent people from understanding exactly what I mean. Once, my Tourette’s was making arms and legs shake. “Are you cold?” an acquaintance asks. “No, I have Tourette’s,” I say. She didn’t respond, probably because my explanation must have seemed like a total non sequitur. Most people associate Tourette’s with saying random stuff, not doing random stuff.

Currently, I am doing some bar work meaning I interact with hundreds of new people every week, only about three of whom I have explained my Tourette’s to. The bar is loud, which masks most of my vocal tics. The motor tics can be interesting though. I often jerk my head to ceiling as I am pouring a pint, meaning that the glass overflows and some customers get as much beer as is humanly possible. This is a plus for the customers of course. It’s value for money. However, if I were to explain to everyone who received a very generous glass-full why they have received a very generous glass-full, it would get pretty boring pretty quickly, and ultimately be of little to no interest to people who just really want their beer, and not a long conversation about the vagaries of my basal ganglia.

Doing the BBC short video, “Things Not To Say To People With Tourette’s” has helped a bit. I was only diagnosed one-and-a-half years ago, meaning that people like cousins, aunts, and friends overseas who have never needed to know about my Tourette’s now know about my Tourette’s.

However, every day, I tic in front of people who decide to stare at me afterwards. It’s impractical to tell them all that I have Tourette’s, so I don’t. But I know that I should be telling some of them why I do what I do. If only there were a simple way to figure out who they are…

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.