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.

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.)

 

Questions People Ask When I Tell Them I Have Tourette’s

  • What’s that?
    People ask me this so often it’s a wonder why I haven’t memorised a paragraph explaining what Tourette’s is. Anyway, Tourette’s Syndrome, or, for the acronym-prone amongst us, TS, is a neurological condition which causes those with it to experience tics – involuntary rapid movements (called motor tics), and involuntary sounds, words, and sentences (called vocal tics). Tics can be painful, embarrassing, or, more often than not, just a total pain in the arse.
  • How does your Tourette’s manifest?
    Tics change all the time, and everyone’s Tourette’s is different, but right now my motor tics include head nodding, eye rolling, eye scrunching, eye shutting, eye darting, cheek slapping, head hitting, tongue sticking, air blowing, head jerking, head banging, finger flicking, hand punching, bird flipping, jazz handing, stomach clenching, knee buckling, leg twisting, feet twisting, and feet kicking. In addition, I also experience echopraxia: the compulsion to imitate the movements and gestures of others.
    As for my vocal tics, they include grunting, whistling, clicking, “lemon”, “lemons”, “lemongrass”, “you’re a fuckface and I hate you”, “you’re so weird” “you’re a *insert literally any expletive here*”, “you’re a *insert literally any random word here*”, “you’re so weird”, “come on”, “you’re walking too slowly”, “move” and “hey”. In addition, I experience echolalia: the compulsion to repeat what has just been said, palilalia: the compulsion to repeat what I’ve just said, and klazomania: the compulsion to shout.
  • When did you get it?
    Normally people get Tourette’s age six or seven, but I developed it at the grand old age of twenty-one. My first tics were clacking my jaw and screwing up my eyes. In the year that followed, the symptoms got progressively worse. Eventually, I was swearing which was when I knew for sure that I had Tourette’s.
  • How do people get even Tourette’s?
    Tourette’s is this complicated neurological thing which no really understands yet. It’s got something to do with dopamine and the basal ganglia, the thalamus and frontal cortex parts of the brain. It is linked to conditions like OCD, ADHD, and Autism Spectrum Disorder, and is genetic.
  • Is there a treatment?
    Yes, but there is no cure, just some medications and therapies which can alleviate some of the symptoms. However, the medicines used are basically second-hand, as they are really intended for schizophrenia and other psychotic disorders. Unfortunately, these drugs come with a lot of side effects, and so for many people with Tourette’s, they just aren’t worth it. That said, for some people they work really well. It’s all a bit of a guessing game.
  • What’s the worst things you’ve ever said or done?
    Just a load of c-words really, but during my final year of university I had a Spanish oral exam during which I could’t stop blowing my examiners kisses. It was pretty awkward.
  • Do you ever say anything rude, and just pretend it’s a tic to get away with it?
    I get this one a lot, and the answer is no, no I don’t.
  • Really? Seriously? You’re not fucking with me? You actually have Tourette’s?
    If I am going through a quiet patch, this is the normal reaction. Or else, they’ll ask me if I have really mild Tourette’s (which I don’t). Many people don’t know that Tourette’s is a condition that waxes and wanes. People with it can go through months where their tics are so severe they are disabling, and months were their tics are so mild you can barely notice them.
  • Haha.
    This is frustrating response, given that I’ve just told you about my disability and not cracked one of my many brilliant jokes. Yes, some of my tics are funny, and yes, in those situations, it’d be weird not to chuckle. But if I haven’t ticced anything amusing, if I’ve literally just told you about my Tourette’s, then please don’t laugh. Wait for a good tic to laugh. It won’t be long, I promise. Think about it, if I just told you I had dyslexia or autism, would your immediate response be to laugh? No. Because these things aren’t funny, and neither is Tourette’s.