Living with Tourette's: 'I went ten years without a diagnosis - it was isolating'

Andrea Bisset was just 13 when she first developed tics.

What began with eye blinking and neck movements quickly developed into vocal tics and coprolalia – the involuntary use of offensive language.

But despite her symptoms, it would take another decade before she was formally diagnosed with Tourette’s syndrome.

“It’s not until someone points it out and you try to stop that you realise I can’t actually stop that,” she told STV News.

Andrea, from Airdrie, says school became increasingly difficult as her symptoms worsened.

“I was aways a shy kid – when the tics started it wasn’t me. it was very overwhelming.

“It’s such a challenging time in school already – the one thing that makes it easier is knowing everyone going through the same thing.

“With Tourette’s, nine times out of ten you’re the only person in your circle going through it.”

‘I was put into isolation’

Tourette's syndrome is a neurological disorder characterised by multiple involuntary movements and sounds — Tourette’s syndrome is a neurological disorder characterised by multiple involuntary movements and sounds STV News

Tourette’s syndrome is a neurological condition characterised by involuntary movements and sounds known as tics, with symptoms usually beginning in childhood.

Andrea said her family sought help through the NHS, CAMHS and educational psychology services, but there was little understanding of the condition.

She said she was often taught one-to-one rather than alongside her classmates.

“I was put into isolation. School’s supposed to set you up for adulthood, and if anything, all it did was hold me back.

“I spent so much time in the living room waiting for the teacher to come round. I loved music and loved PE, but I wasn’t able to do that because I didn’t have teachers to come out and teach me these things.”

Andrea said the difficulties continued when she later studied sports coaching at university.

“Peer and group tasks were a real struggle. Walking into a lecture hall with 300 people was alien,” she added.

Andrea went viral after her involuntary tics were recorded during driving lessons NLSchoolofMotoring/TikTok

Two years ago, videos of Andrea’s involuntary tics during driving lessons went viral online, introducing thousands of people to the realities of living with Tourette’s.

The videos later led to a role in the Bafta-nominated film I Swear, based on the life of campaigner John Davidson.

Meeting John was a turning point for Andrea.

“He spoke to me for 15 seconds and he was already able to tell me more about my tics than what I already knew or recognised myself,” she said.

“Having someone put themselves out there the way he did was so brave and I think that he probably doesn’t realise just how much it actually had an effect on the people living in my house.”

Andrea was offered a part in John Davidson biopic I Swear STV News

Before filming, Andrea says she had never knowingly met another person with Tourette’s.

“I’d never been in a room where I didn’t have to apologise for what I was doing,” she said. “It was freeing because I knew I was going to be accepted.

“I remember saying if this [film] was about when I was a kid, things would have been so different.”

Andrea later became involved with Tourette Scotland, a charity supporting people living with the condition and their families.

“People don’t need to understand the condition to accept it. That’s made a big difference,” she said.

“You can’t waste time explaining a condition to someone who doesn’t want to understand, but you need to put time into accepting yourself.”

She says everyday life has changed dramatically over the last decade.

“It’s the small things – I’d never have walked down to the shop myself swearing like a trooper ten years ago. Those small tasks don’t affect me so much, I’m now comfortable doing them. Life has changed.”

‘She ticced continuously for 24 sleepless hours’

Andrea’s experience is echoed by others living with Tourette’s, including Nia Duncan.

Charity chair Andrena Duncan told how her daughter developed rapid-onset Tourette’s at the age of 15.

“She ticced continuously for 24 hours and never slept,” Andrena said.

“There was no build-up, no warning signs.”

She described the following months as “chaos and appointments”, with Nia repeatedly admitted to hospital.

“We used to sit up at night and talk and all of a sudden she couldn’t have this conversation because it was all vocal tics.

“She was going to be a doctor, all this stuff, all of a sudden, ‘I can’t do this because I can’t stop ticcing.’

“Watching the changes was heartbreaking but she never let it get her down. She’s fought every step of the way, doing what she could to get where she is.”

Nia was diagnosed with Tourette's syndrome — Nia was diagnosed with Tourette’s syndrome STV News

Nia received a diagnosis within a year and is now studying law at university.

The student also had a part in I Swear – and said seeing authentic portrayals of the condition on screen had been “really validating”.

She also attended a ‘blue carpet’ screening along with other people in the Tourette’s community.

“Usually places like cinemas or libraries can be hard, but being surrounded by so many other people with Tourette’s was nice.

“It meant so much to see the lives of people with Tourette’s reflected realistically on camera. It meant so much for us to be a part of it.”

Nia says seeing public figures like Lewis Capaldi and Billie Eilish speak openly about Tourette’s has helped young people feel less alone.

“You look at older people in the Tourette’s community and think ‘you’ve got a life, a family and a career you’re passionate about. That could be me too’. It’s helpful to see their success.”

She has since built a strong circle of friends with the condition.

“You can hear us coming,” she added. “We sort of bounce off each other – we talk about our ticcs but we also talk about work, university and life.”

Tourette Scotland is now calling for clearer NHS referral pathways and mandatory training for school staff to better support young people with Tourette’s.

Andrea believes earlier diagnosis and understanding could have changed the course of her life.

“If I had the armour of that diagnosis at 13, my adulthood would look very, very different now.”

The Scottish Government said: “All children and young people should receive the support they need to thrive in their education.

“All staff in schools support children with additional support needs (ASN), and all teachers already undertake ASN training during initial teacher education.

“We also expect NHS health boards to meet the health and care needs of all children in a person-centred manner, based around their individual needs and preferences.”