- People don’t care about you. Every day, I walk through central London, whistling weirdly, clicking my tongue, saying random sentences, swearing, repeating what others have said, shouting, almost falling over because of the tics in my legs, hitting my head, and slapping my face. It could well be a symptom of living in such a large city, but people look at me, stare at me a bit, and then look away. That’s it. Those are the consequences. In a way, this is more liberating than depressing. It makes you realise we don’t have to follow all of society’s stupid rules.
- People rarely really understand what Tourette’s is. A lot of people simply equate Tourette’s with swearing. A lot of people think Tourette’s is a mental illness. A lot of people think Tourette’s is just a punchline. Few people realise just how diverse the condition is, meaning that a large part of having Tourette’s is explaining what Tourette’s is.
- I didn’t really understand what Tourette’s is. Before experiencing the symptoms first-hand, I had no idea that repeating what others do or say is a facet of Tourette’s, I had no idea that tics constantly change from week from week, and I had no idea that me having Tourette’s had anything to do with me having OCD.
- People with Tourette’s have to tell people they have Tourette’s all the time.
For me, one of the most awkward things about having Tourette’s is knowing when and who and how to tell people I have it. Sometimes, it’s obvious. For instance, I know I have to tell my hairdresser, because I might move suddenly and then she might cut off half my hair. But do I tell shop assistants? Every single customer that walks in the door of where I work? Waiters? Fellow gym-goers? Random strangers on the Bakerloo Line who have just heard me shout “shit” at the top of my voice? Sometimes, when I do tell people I have Tourette’s, it doesn’t work out too well because they don’t know exactly what it is. Sometimes, when I do tell people I have Tourette’s, it feels a bit like I’m saying, “Hello, my name is Alice, and this is what’s wrong with my brain.”
- People react to tics very differently. Sometimes, if I am ticcing in a café, staff will speak to me in a patronising way. Sometimes, if I am ticcing in a shop, security will be suspicious and follow me around. Sometimes, if I am ticcing in a public place, people will think it’s OK to stare at me, as if they can figure out what’s wrong with me just with their eyes.
- A small percentage of tics are funny, but most are just annoying. When I say “You’re a low-calorie bitch!”, or shout out the letters I have in Scrabble, that’s funny. But if I smash a window with my fist, or hit my head against a wall, or can’t stop shaking as I try to go to sleep, then that’s not that funny. It’s annoying.
- Tourette’s hurts. If you repeatedly make the same movement over and over again, whether it be a heard jerk, muscle clench or – my current favourite – wall punch, then that’s going to hurt. Maybe not immediately, but eventually. But Tourette’s also hurts, like, feeling-wise. I have been excluded from stuff because of my Tourette’s, and it feels…unfair.
- If someone has a problem with you having Tourette’s, if they are especially embarrassed by it, or if they don’t want to be around you when it’s particularly bad, then they probably aren’t worth knowing. I started ticcing when I was in my early twenties, and it made me realise that the friends who had a problem with it weren’t actually friends, and the friends who didn’t have a problem with it were awesome. This was very helpful information.
- There is no rule book to living life. There is even less of a rule book when you have Tourette’s. Since developing Tourette’s, I have asked myself the following questions: Can I drive with Tourette’s? Can I work in customer-facing roles with Tourette’s? Can I work with Tourette’s? Can I go to the cinema with Tourette’s? The library? The theatre? And the answers are all the same: Sure. Maybe.
“So what do I do if I want to buy a bottle of wine?” the customer asks me.
“To have in *hey* or *hey* take away?” I ask.
“You just literally *hey* take it to the till and *hey* pay for it there,” I say. “Sorry, I have Tourette’s. I don’t mean to say *hey* all the time.”
“Oh, do you?” the customer says. “I wish I had Tourette’s.”
He says this laughing, presumably because he thinks what he’s said is funny. And I laugh too. Not because I think what he’s just said is funny, but because I am serving him, and that’s what you do when you serve people: you laugh at their jokes regardless of whether or not they are actually funny.
Presumably, the customer equates Tourette’s with swearing, likes to swear, and wouldn’t mind getting away with some more profanity in his life.
But coprolalia – the compulsion to say socially unacceptable words and phrases – is quite rare amongst people with Tourette’s. It’s a small part of a largely unfunny and totally unsweary (not a word) condition.
For instance, this week, I’m punching walls and kicking cupboards. My hand is red and swollen and painful and my knees keep on buckling when I try to walk. This is affecting my communication and mobility, but on top of this, my Tourette’s is also affecting my vision, because my eyes are rolling, darting and shutting of their own volition.
But the customer’s reaction is so familiar that I’m not even frustrated or surprised by it. In truth, it took me only a few weeks of having Tourette’s to realise that, for many people, Tourette’s just isn’t a disability, it’s a punchline, and when people hear a punchline, they laugh.
This is the excerpt for your very first post.
I’m in a store which sells tasteful, Scandinavian gifts and homeware. Essential items like beard oil, boxes of salted liquorice, and decorative wooden elephants costing over one thousand pounds.
In this tranquil shop, full of tranquil people, browsing for tranquil things, my klazomania kicks in.
“Lemon!” I shout. “Lemon! Lemon! Lemon!”
The shouting really does jar with the store’s ambience. But, hey, people with Tourette’s need to buy beard oil too, and so I continue to meander through the rows of goods that I cannot afford.
It’s not long before I notice my shadow: a security man drawn to my citrusy speech. He watches me, approaches me, staying near but not that near, and never actually deigning to talk.
Voluntarily, I throw him an inane grin and, involuntarily, another “Lemon!”
I get it. He wants to figure out whether I am a shoplifter, or some strange citrus-based troublemaker. But if I wanted to pinch anything from this store (which – if I had no moral compass – I totally would, everything here is so goddam tasteful), I would be quiet and not loud about the process.
It’s just common sense that people with Tourette’s make for bad shoplifters, though. Especially with my Tourette’s, because as well as shouting out “lemon!” at random intervals, I am also prone to saying “yoink!” whenever I pick up something.
On my way out, I want to tell the security man I am a klazomaniac, not a kleptomaniac. But I don’t, not only because klazomania is, some might argue, one of English’s more uncommon words, but also because I don’t want to offend any thieves in the vicinity.
So, I exit the shop, liquorice-less, beard oil-less, and elephant-less, leaving behind a wake of bemusement and amusement, and I’m on to the next store, an afternoon of loud lemons stretching out before me.