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‘TOURETTE’S IS NOT A JOKE. IT DESTROYS YOUR LIFE’
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
nita’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
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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
‘WHEN I STEP OUT OF THE DOOR I NEVER KNOW IF I’M GOING TO SHOUT A SLUR OR WINK AT SOMEONE’
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
‘PEOPLE KNOW ABOUT THE SWEARING, BUT THEY DON’T KNOW ABOUT THE PAIN IT CAUSES’