Young people with Tourette’s share their stories of how they’ve learned to love their tics
words Patrick Heardman
Billie Eilish has opened up more about her experience living with Tourette's syndrome, saying that she gets “incredibly offended” when people laugh at her tics, but has come to terms with the struggle and arrived at a positive place with her condition.
Tourette's is a condition that causes people to make “involuntary sounds and movements” and usually appears during childhood. There are instances of adult-onset Tourette's, although these are much more rare. Eilish was diagnosed with the condition when she was 11-years-old.
Opening up on David Letterman’s show My Next Guest Needs no Introduction, Eilish said: “if you film me for long enough you’re gonna see lots of tics. The most common way that people react is they laugh because they think I’m trying to be funny… and I’m always left incredibly offended by that."
"It’s very, very interesting, and I am incredibly confused by it," she said, adding that she was. “very happy talking about it”.
"What’s funny is so many people have it that you would never know. A couple artists came forward and said, 'I’ve actually always had Tourette's,' and I’m not gonna out them because they don’t wanna talk about it, but that was actually really interesting to me."
Far from letting it spoil her career, the Oscar-winning artist revealed that she had made peace with her condition, saying “It’s not like I like it, but I feel like it’s part of me. I have made friends with it. And so now, I’m pretty confident in it. When I’m moving around, I’m not ticcing at all. When I’m riding my horse, I’m not ticcing. When I’m moving and thinking and focusing, when I’m singing.”
To find out what it’s like living with Tourette’s, young people who have come to embrace their condition and learned to love their tics talk to Woo. Here, they share some of their struggles and positive experiences.
“I honestly didn’t know Billie had Tourette's until this article, and reading about it frankly made me smile. I’ve never seen a mainstream celebrity with Tourette's, or at least any that talk about it. In the past it’s felt limiting but seeing someone be so successful, especially in music when tics are often vocal – it was nice. Representation matters y’all!
I was diagnosed at either four or five, which is when I think a lot of people start showing symptoms. In the past I’ve had everything from verbal tics like grunting to more somatic things like blinking my eyes. My case was a little less severe. Never anything like the way the media portrays Tourette's. It’s really a spectrum, but people tend to think about compulsively cursing or something like that.
Tourette's isn’t something I’ve spun to be positive, but it has given me an extra level of empathy. I will say though, in a sense I have made friends with it, because now I’m in control of it, and it is not in control of me. It’s something that I’m always going to have to deal with, it won’t go away – so I had to stop hating myself over it. It’s more like a fact of my life now. I’m not ashamed to tell people about it. Owning it kind of set me free in a way.
The most positive thing to come out of it is probably self acceptance. With Tourette's, you’re often making noises or doing things that put you in a spotlight, and being okay with yourself is the only way to get around it.”
“Looking back, I had vocal tics for a long while before I even knew Tourette's was a thing. My parents got really mad at me when my vocal tics started to surface, and punished me for them. So I learned to suppress.
Even now, after being diagnosed for about a year, my parents still don't really get it. For Tourette's awareness month, I made little teal ribbon pins to give out to people at my school. About a week in I had just a few left, and I left them on a desktop.
That day my mom came up to me right before we were going shopping, holding one in her hand. She asked me to help her put it on. I literally almost cried. She is the least understanding of my family, and she showed that she really did support me.”
Lemon, 22, California
“I was helping my aunt move house, and at the time I was struggling with letting my tics out because that part of the family didn’t know I had Tourette's. She wanted me to help her move some stuff into her storage and I went on a car ride with her. She asked me about my tics and I told her hesitantly.
She ended by telling me she understood, that it is okay to be a little different from everyone else, and it’s okay to tic in front of others because I shouldn’t care what others think of me if it’s in a bad way. I was so grateful for her and how she handled the situation.”
“I went to a gas station for coffee on a pretty active tic day. My most common tic at the time was making a hiccup noise followed by hitting my chest. The cashier instead of asking if I had hiccups asked if I had Tourette's. I told her that I did and we had a pleasant little chat. She told me about someone that she knew with tics and even went on to say how badly Tourette's is portrayed in the media. It was a rare moment where I felt a stranger genuinely look past my tics and see me as a person.”
r/Tourette's user XxtraTourettestriall
“I wouldn't trade my Tourette's or the experience I had growing up with it for the world. It made me who I am and taught me so many things. I love the part of myself that is Tourette's.”