The tics and verbal outbursts associated with Tourette’s syndrome are often mocked. But the women living with it (many undiagnosed) are isolated and ashamed. Anna Moore talks to three sufferers who decided to embrace this debilitating condition
Anita’s tics began before she could speak – or before she knew she could speak. As a toddler, before she said ‘mama’ or ‘milk’ or any other conscious word, she said, repeatedly, at random times… ‘Michael Schumacher’. ‘I didn’t watch much TV and had no interest in Formula One, so I don’t know how I latched on to that name, but it lasted well into adulthood,’ she says.
As a young child, she’d whistle, pop her lips and swear without knowing why. Her arm would shoot to the side with no warning. She’d pinch people ‒ her mother, her friend, strangers on a bus. At the age of 12, her tics resulted in her being beaten unconscious by some older pupils – at that point, she left formal education for home schooling.
Multiple trips to the GP didn’t help. Anita’s doctor told her it was ‘attention-seeking behaviour’ that she’d ‘probably grow out of’. ‘When I heard that, I was totally ashamed,’ says Anita, who is now 30. ‘I barely went outside and lived in fear of people seeing me tic, of being judged. I didn’t have siblings – it was just me and my mum – so I was very alone.’ She became agoraphobic and began to self-harm (her arms show the scars). Years passed and the tics continued. ‘I couldn’t see how it could be “attention-seeking” when it happened when I was on my own,’ says Anita.
Still, she did not recognise her tics as Tourette’s syndrome. The neurological disorder affects about one per cent of the population ‒ there are more people with Tourette’s than there are with green eyes ‒ yet it still remains largely hidden and misunderstood. (Research shows that it takes an average of five GP visits before a referral for specialist help.)
‘Like most people, I believed the stereotype that Tourette’s was people shouting swear words,’ says Anita. ‘I was having bodily movements and my verbal tics could be random including the words “sheep” and “cats”. The real problem is that Tourette’s is believed to be a male condition. It’s much harder to get a diagnosis if you’re a woman.’
A recent surge of tics in teenage girls has thrown Tourette’s syndrome into the spotlight. At the start of 2021, some specialist clinics were receiving three or four referrals of adolescent girls a week compared to the normal rate of four to six a year. There have been various theories to explain the rise – the stress caused by the pandemic and lockdown living, as well as possible ‘contagion’ from social media platforms such as TikTok where people with Tourette’s have gone viral with videos of their symptoms.
Suzanne Dobson, CEO of UK charity Tourettes Action, hopes the flurry of headlines will raise the profile of what to many is seen as a ‘joke’ condition. ‘If I’m in a taxi and mention my job to the driver, they’ll say, “Is that the one where people shout and swear?” she says. ‘In fact, only ten per cent of people with Tourette’s do that. Tourette’s brings on a huge range of involuntary sounds ‒ coughing, grunting, odd phrases, operatic noises ‒ and a vast number of involuntary body movements that can involve any muscle in the body.’
She continues: ‘People know about the swearing but they don’t see the pain it causes, the life it stops. I know people confined to wheelchairs because their legs give out from under them. Others have rubbed their eyeballs so hard ‒ 200 times a day ‒ they are now blind. Nobody knows about the fear of leaving the house, catching a bus or going to the shops. No one talks about the research which shows that having Tourette’s makes you four times more likely to die by suicide.’
The causes of Tourette’s are still unknown, although it’s believed to be a combination of genetics, an excess of dopamine and a sensitivity in the brain. Though tics typically start in early childhood and, for 70 per cent of cases, largely disappear by adulthood, stressful life events can also trigger them in those born with a predisposition. Dobson knows a woman whose tics began after she was raped, and a man whose tics were triggered when he found the body of a close friend who had killed himself.
Although Tourette’s has until recently been diagnosed in four times more boys than girls, the ratio is changing, says psychiatrist Dr Uttom Chowdhury, co-author of Tic Disorders: A Guide for Parents and Professionals. ‘As with autism, we’re realising that girls with Tourette’s might be more likely to be undiagnosed. It could be that it is picked up more in boys because girls are masking, staying a bit quieter, more hidden, causing fewer problems in school.’
This was true for Andrea Shine, now 30, whose Tourette’s went undiagnosed until she was 28. ‘I had tics as far back as I remember but they were thought to be “bad habits”,’ she says. ‘As a child, I used to scrunch my nose and mouth, make a mouth-pop noise and a humming sound. My mum would get annoyed and tell me to stop, but it was just seen as an annoying habit.’
It was only in her 20s, as a mother of three living in Norfolk, that her tics snowballed. ‘It’s like this build-up of energy that can only be relieved by a tic,’ she says. ‘The first was a leg kick in the evening when I was tired. Then it progressed to my arms throwing themselves up, then a head jolt. Then there were more random noises including squeaks or grunts. It was extremely frightening,’ she continues. ‘I was a seemingly healthy adult unable to control my own body.’ Tests and scans ruled out life-threatening degenerative diseases and instead the diagnosis was Tourette’s syndrome. Now the tics are daily, sometimes constant. Her life has turned upside down.
‘On a bad tic day, I suffer vertigo and sickness from head-shaking and jolts; I have drop tics where my legs give way and I’ve fallen downstairs a few times,’ she says. ‘I have difficulty washing up and will throw glasses and plates. I’ve been banned from using knives and cooking with hot pans ‒ I’ve gone from being an independent woman to constantly needing help from my partner.’
Being a mother with Tourette’s – her children are three, eight and nine – is especially hard. ‘Sometimes, I completely avoid the park playground as I don’t want to curse or throw insults around,’ she says. ‘I’d love to speak to other parents, but I feel like they don’t know how to approach the topic so they avoid me. I can’t attend school assemblies or concerts in case I upset anyone. I would absolutely love to sit in silence and watch my children’s nativity play but that seems unlikely ever to happen.’ So far, Andrea’s children have adapted well. ‘The kids and I laugh about the silly things I say,’ she says. ‘Tourette’s is genetic so there’s a chance one of them also has it. The older two fully understand – I’ve shown them people on social media with tics, and my nine-year-old proudly explains what Tourette’s is to his friends. When it comes to the youngest, it’s harder. He has started to repeat a few naughty tics he has heard me say ‒ it’s very hard to explain to a toddler.
‘Tourette’s is very much seen as a male disorder,’ continues Andrea, who posts about her life on Instagram as @mummashine. ‘I’d love to have some mum friends who really understand what I’m going through. I do think women have it harder.’
Terrina Bibb, a 28-year-old artist from Redditch, Worcestershire, who also lives with Tourette’s, agrees. ‘You don’t feel pretty, you don’t feel feminine,’ she says.
Terrina’s tics began when she was a final-year art student. ‘My first recollection is clearing out a cupboard with my mum and having this sensation that I could only get rid of by throwing my head back.’ More tics followed. Soon Terrina had left her job as a waitress – swearing in front of a table of customers and throwing peas over another made the work impossible.
‘At first I was thinking, “Am I faking it? Is it in my head?” so when I was diagnosed with Tourette’s, I was almost relieved,’ she says. ‘But my life kind of got taken away. I know there are people out there with worse illnesses, life-threatening ones, but I rarely go out. When you leave the house, you don’t know what’s going to happen. I need a stick because of my leg tics and I might be walking along the street then say, “You’re fat”. If you’re in an airport, you might shout about a bomb. Your brain works against you in almost every single way.’
Except one. When it comes to her art, Terrina has made it work for her instead. ‘I do portraiture and thought Tourette’s would take that away, too ‒ but I just couldn’t let it,’ she says. ‘Instead, I’ve had to let the tics get involved in my drawings.’ Using paint was impossible, so now Terrina holds pen to paper and has developed a “scribble” style for her drawings, which sell from £160 to £800, depending on what the client wants: ‘I really concentrate in order to do the eyes, mouth and nose, then let the tics happen for the rest.’
Having a passion can be key, says Dr Chowdhury. ‘There is no “cure”. There’s medication which can dampen down Tourette’s, but when you stop taking it, the tics can come back.’ Many people find the side effects, including drowsiness and nausea, impossible to live with long term. ‘When I see children with tics, I look for a passion,’ Dr Chowdhury continues. ‘If they play sports, or love drama, or music, or anything that they can focus on, they’ll be OK. I try to normalise it for them – it’s a neurological quirk that shouldn’t stop you doing what you want.’
For Anita, finally obtaining a diagnosis in her 20s allowed her to embrace life. ‘It gave me an explanation,’ she says. ‘It meant that it wasn’t my fault ‒ I wasn’t a troubled, violent person. It was incredibly freeing.’
She volunteered for an animal rescue charity (both Anita and Andrea have found that being around animals calms their tics). She started her own business collecting sea glass from her local beach and selling it – then, as her confidence grew, she started posting funny, fascinating videos online that demystify the disorder. She is now a popular Twitch streamer and a YouTuber ‒ under the moniker ‘Sweet Anita’ ‒ with 1.3 million subscribers.
Anita is beguilingly beautiful and remains seemingly composed in her clips, even mid-tic attack. ‘I give people something that I don’t think a dictionary definition or a Wikipedia page will ever do,’ she says. ‘You can learn about our condition but you can’t learn how to make friends with us, how to see past the tics, how to interact and be calm around someone who is different to you.’
Anita is also planning to write a book and dabble in stand-up comedy. Her life is busy and full and, though currently single, she has no trouble finding dates. ‘I’ve had patient, loving partners who don’t mind my condition whatsoever,’ she says. ‘I used to have a dancing tic which I was really embarrassed by – but whenever I did it in public, my ex would just start dancing harder so that people would stop looking at me and pay more attention to him!
‘My tics cause problems every single day,’ she continues. ‘When I step out of the door, I don’t know if I’m going to shout some kind of slur, or whistle and wink at someone who thinks I’m propositioning them. Not every person you inadvertently proposition is going to be a safe person to turn down. I have been punched.’ But for Anita, nothing could be worse than staying shut in her house.
‘Living in fear of people, wasting my life, thinking I’d never have any positive experiences at all was far more terrifying than any altercation,’ adds Anita. ‘Being relaxed, leaning into who I am, shedding the shame was the best thing I could do. If I can open some doors and start some conversations so that down the line we won’t waste a bunch of scientists and artists and brilliant people who’d have been hidden away from the world, then I’m happy – and I wouldn’t change a thing.’
For more information and advice on Tourette’s, please visit Tourettes Action, tourettes-action.org.uk