When I started writing this blog a year ago, I resolved to be honest but not to slip into self-pity. Tonight in this entry I’m going to tread that fine line – I’ve been feeling overwhelmingly upset today.
It was a conversation with an old woman on a bus that started it off. I don’t write about every negative exchange but I’ve decided to describe this one because I suspect there are many people who think about Tourettes in a similar way.
I sat down next to her and she started tutting and sighing when I ticced.
TH: If I’m swearing it’s not at you or because I’m rude, it’s because I have Tourettes Syndrome and I can’t control the movements and noises I make.
Woman: You are rude and you keep swearing.
TH: I can’t control it, I’m not choosing to swear.
Woman: I don’t believe in Tourettes.
TH: I wish I could ‘not believe’ in Tourettes too, but that’s not really an option for me.
Woman: You just need to stop it. Why is it only bad words?
TH: It’s not only swearwords. You can hear that I also say ‘Biscuit’ and lots of other words. Only 10% of people with Tourettes swear but unfortunately I’m one of them.
Woman: I’m not interested in the other words. You should stop being offensive.
TH: I’m not saying offensive words deliberately. They aren’t directed at anyone and they don’t mean anything.
Woman: Look at the children over there, they have to listen to you. What do you think they think?
TH: I hope they can see a woman who makes a lot of different noises and movements that she clearly can’t control, but also someone who’s able to have a thoughtful conversation.
Woman: How do those bad words get into your head? You must be bad or someone must have put them there.
TH: You know swearwords too, but can choose not to say them. I can’t stop any word I know from turning into a tic that I keep repeating.
Woman: Rubbish! You should stop. I don’t think you’re even trying to stop. You should just stop saying the swearwords. I don’t care about ‘biscuit’.
At this point a passenger sitting behind us interjected.
Passenger Two: If I can give you a doctor’s opinion, what you’re asking her to do isn’t possible. She has Tourettes Syndrome, which means that the connections in her brain aren’t working properly and she can’t stop the noises she makes.
Woman: Why is it bad words? Someone must have put them in her head.
Passenger Two: As she explained, it’s a mix of noises.
A third passenger standing nearby spoke to the woman.
Passenger Three: Don’t worry about her. I don’t think she’s very well.
TH: I’m not sick. I just have a condition that means I make noises and movements I can’t control. But I am in control of my thoughts.
My stop was coming up and with relief I thanked the doctor, said goodbye to both women and got off the bus. As I walked away I felt shaky and tearful but managed to compose myself.
Later at Leftwing Idiot’s while he was making dinner we talked about what had happened. He told me not to dwell on it, but suddenly, from nowhere, I started to cry uncontrollably.
I felt drained by the relentlessness of my tics, by the constant need to explain them, by the judgements of other people and by so frequently feeling humiliated. When I stopped crying and started to feel better, Leftwing Idiot pointed out that I didn’t need to worry about any of that in his house. He said he knew it was hard and his empathy and reassurance helped me let it go.