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…