Living with Tourette’s: It’s about so much more than swearing

abstract background for Tourettes Awareness Month

Tourette’s is not always about streams of profanity, and a ‘hilarious’ life of upsetting people with my tics…

Lili Lowe on the realities of living with Tourette’s syndrome, busting a few myths and calling for better understanding about a condition that is a magnet for misinformation.

Can you tell us about your journey with Tourette’s syndrome?

I remember being maybe 10 or 11 and when I started making weird, uncontrollable grunts. They were really annoying. I’d have this odd feeling in my chest, like something needed to come out –and until it did, it almost hurt. After a few years, that particular tic disappeared, and I never really thought much of it.

But when I was about 19 or 20, these weird sensations came back. This time, they were accompanied by words – I started saying “Hey!” or “Hi!” or “Hello!”. At first, I was so confused. I thought maybe a terrible job, terrible relationship, and a sense that the world was falling apart was stressing me out beyond reason.

But as these new tics continued and became more severe, I realised that maybe it wasn’t going to go away quickly. At first, I disregarded the idea that I might have Tourette’s. But trying to explain to people why I was shouting “Hello!” in their faces for no apparent reason got tricky.

Fast forward to today, I’m getting more comfortable with telling people I have Tourette’s and accepting the fact. And I’m constantly fighting that lovely fella known as Imposter Syndrome, who keeps popping into my head.

“Oh, you just HAVE to make those noises do you? Just stop doing it, you’re being dramatic…”

What type of tics do you experience and how do they affect your daily life?

My tics are only verbal. I am very thankful they are not offensive – count your blessings and all that.

At the moment, my tic list includes the “Hey!”, “Hello!” and “Hi!” greetings in a variety of pitches and tones. There are a few weird squeaks, almost mouse-like, but not in a creepy way. It sounds almost like a small, high-pitched child.

I always say that the ‘greeting’ tics have stuck around because my Tourette’s just wants to be acknowledged

And my latest persistent tic is “Bah!” I’m not sure how I feel about this one, but a few friends have said they hope it sticks around for Christmas. Bah humbug!

Over the last few years, there has been a broader range of tics, but a lot of them come and go. I always say that the ‘greeting’ tics have stuck around because my Tourette’s just wants to be acknowledged and is desperate for attention.

How do you manage your tics?

I don’t think anyone with Tourette’s should have to manage their tics. It’s simply not fair. It would be like telling someone who desperately needs to sneeze that they’re not allowed to.

But of course – and I’m sure I’m not alone – there are some situations where I would like to not tic. It’s normally meeting new people or situations where I don’t want to draw attention to myself.

Sometimes I’ll do them more quietly, which can help scratch the itch. But ultimately they need to come out. Holding them in means I’ll suffer later.

What are some of the everyday challenges you face because of Tourette’s syndrome?

I’ve just started dating again – I know, the joys – but this means meeting new people. And I don’t always want to tic, especially when I’m trying to look hot and elusive. The sexy mystique sort of goes out of the window when I’m shouting “Hello!” in someone’s face like an angry Karen while they’re trying to tell me a story.

I don’t like all the questions, even though I know people are curious. I’ve been on dates where I have been upfront about it and allowed myself to tic. But then they’re full of questions – and there is a lot more to me than just Tourette’s.

How do you navigate these challenges in your day-to-day life?

In the past, I have held them in and not told new people about my tics to avoid the awkwardness. But trying to explain it further down the line then becomes hard.

It’s almost as if people don’t believe me. “Well, you didn’t do it for the first few times we met…

It’s almost as if people don’t believe me. If someone says something like, “Well, you didn’t do it for the first few times we met, so surely you don’t need to do them?”, this really plays into my imposter syndrome.

With that in mind, I have decided to try and be more open. Sometimes I tell people in advance of meeting them. Or I have just let the tics out and been very clear that I have Tourette’s. Generally, it’s okay. It’s a little scary for me, but it’s probably better this way.

Does Tourette’s syndrome affect your relationships with coworkers?

I’m not punching anyone or swearing uncontrollably or calling a stranger on the bus a fat bitch. So in that sense, my tics are non-offensive and easy to deal with. I feel very blessed about that. I like to say I’m overly friendly – and it probably seems that way when I’m shouting “Hey!” at everyone in the beer garden.

But work has been interesting. When I was working as a chef for a funny little pub, my tics started to become more frequent and noticeable. I felt comfortable to tic there, everyone was a bit mad, and it just became a comical part of our work. It was nice.

I honestly had no idea how they’d react. I knew they all thought I was a little weird anyway

After working at the pub, I took a job in an all-female office. Right from the start, I felt isolated. Don’t get me wrong – they were all lovely – but they were the type of women who went for morning runs, were a part of their kids’ PTA, did lots of yoga, had “tried weed once at uni” … I just didn’t fit. It wasn’t a Mean Girls situation – they were all sweet and welcoming – but I knew I wasn’t going to make any real friends.

When I worked there, I held my tics in all day, every day, and never once let on that I had Tourette’s. We were in such close proximity to each other, and I honestly had no idea how they’d react. I knew they all thought I was a little weird anyway. It was fine. I was only in the office three days a week and my tics aren’t too severe. So, I could hold them in, but my ex got the brunt of it later on at home.

What about when you’re out and about with strangers or in public places?

If I’m out and about with mates, I will tic happily and shout at strangers. I think there’s a confidence with being around your friends. They’ll back you up. On multiple occasions when I’ve been shouting and someone gives me funny looks, I’ll hear one of my mates sassily say, “She’s got Tourette’s syndrome”.

I like loud spaces. Gigs and busy pubs are perfect places to tic because no one even notices. I can be as loud as I like. And you’ve got to try and have fun with it. Something I really enjoy is when a new person joins our group, unaware of my tics, I’ll shout “Hey!” at them and watch them look around at no one batting an eyelid, as if they’re the only one hearing it.

How do you think society perceives Tourette’s syndrome?

I think the biggest misconception about Tourette’s is that it’s common for people to swear. There have been so many documentaries covering people with more offensive tics. So I think people assume that everyone with Tourette’s just swears all the time. But it’s such a diverse disorder. Tics can range from eyebrow movements to blowing breaths to repetitive grunts.

Read more: Can microdosing psychedlics help your mental health?

What would you like others to know about living with Tourette’s?

This one goes out to my exes who would get annoyed and angry with me for my tics. I am aware that the tics can be loud, especially when you’re trying to relax. But I can promise you, it is a hell of a lot more distressing for me than it is for you. The more you get annoyed at someone for their tics, the more anxious and stressed they’ll become – and the more they’ll do it. Don’t be a dick!

Have you found any activities that help you with tics?

Anything that involves intense concentration is good. When I’m totally wrapped up in something, I don’t tend to tic.

What changes would you like to see in terms of societal acceptance and understanding of Tourette’s?

Most of the online information, such as the NHS website, talk about children and tics. For years, the understanding has been that it starts in childhood, but this has been disproven. Plenty of people who never experienced tics as children have developed Tourette’s as adults.

It would be nice to see more support for adults experiencing tics for the first time, instead of just advice on what to do if your child starts having tics.

What advice would you give to someone who may have Tourette’s?

It’s not your fault. You’re not doing it on purpose. Usually, other people are so in their head that they might give it attention while it’s happening, but then very quickly move on.

I’ve found great support and got a lot of questions answered by other Tourette’s sufferers on Reddit’s r/tourettes subreddit. It’s full of people with Tourette’s – and those who deal with people with Tourette’s – so you can get both sides of the story. When I have asked questions, everyone has been so lovely, so 100 per cent would recommend.

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About Lili Lowe
Lili works across all the channels; writing articles, taking photographs, creating content, and designing eye-capturing imagery. She's an animal-lover who cries just seeing a picture of a baby sloth.

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