When Amelia Perrin was in the queue at Pret during lockdown last year, she was humiliated by a stranger for clearing her throat.
The man, who assumed she had coronavirus, shouted at her to ‘get away’ in front of other customers, which almost brought her to tears.
While she hasn’t experienced many confrontations since leaving school, it is one instance where she felt unable to explain herself, and instead, apologised.
The noise she made is just one of the symptoms of her Tourette’s syndrome - an incurable brain disease that causes sudden movements.
It can be exhausting for the 26-year-old to try and stop her tics - which she likens to trying to hold in a sneeze.
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Amelia is speaking to the Mirror ahead of Scarlett Moffatt’s debut documentary on Channel 4 - Britain’s Tourette’s Mystery - which sees her travel around the country to raise awareness and uncover potential causes of the condition.
The TV personality, who first gained popularity on Gogglebox before winning I’m a Celebrity… Get Me Out of Here! in 2016, developed sudden onset tics when she was a teenager, which she says was “really scary”.
For Amelia, more conversations about Tourette’s are “super important” - as it is a condition commonly associated with coprolalia - the repetitive use of obscene language, despite this only affecting about 1 in 10 people with Tourette's.
“It’s the only incurable condition in my opinion that’s still the butt of the joke,” Amelia says.
“Which other life-altering conditions are made fun of the same way?
“It seems we’ve moved on from joking about some things, but Tourette’s is still fair game to make fun of.”
Despite family history, Amelia, a search planner for a fine jewellery company, wasn’t diagnosed with the syndrome until the age of 16 after being physically and mentally exhausted from her tic-ing.
The symptoms started from screwing up her face when she was very young, to becoming a throat-clearing type of cough and moving body parts randomly.
Over the years, her syndrome has improved, and now excessive rapid eye blinking is her main tic - which can worsen with tiredness.
This can be a common occurrence for the former Miss GB beauty queen finalist, who gave birth to a baby girl 10 months ago.
“I probably couldn’t go a full day without a tic, but now I definitely have days where it won’t be noticeable to others,” Amelia, who lives in Essex, says.
“My boyfriend and mum always notice as I’m so close to them, and comment on it when I’m super tired.
“My rapid blinking actually takes up a lot of physical energy, as well as the energy of trying to control it or stop it - it is super draining.
“It’s hard to describe how tired tic-ing can make me, but imagine you were constantly moving a body part and couldn’t stop, it would get super tiring very quickly.”
When she was a teen, Amelia had a few therapy sessions with the NHS, however, she didn’t find it to be effective.
She did, however, learn how to better explain it to others.
“I still use things the therapy taught me, like telling people ‘if I hold it in, it feels like trying to contain a sneeze’.”
She was offered therapy after a few embarrassing incidents at school.
“When I was sitting my GCSEs, I remember looking at the seating plan for an exam, and the boy who was sitting next to me was like ‘oh no not Amelia, she makes those weird noises’,” Amelia recalls.
“Another time was during a biology exam in the classroom, it was dead silent except for me, and a girl just turned around and shouted at me to shut up.
“This was before my diagnosis so the teacher didn’t say anything, but she did look at me sympathetically.”
Now Amelia is through the worst of it, she sees it as just something she has to monitor.
But with it affecting more than 300,000 children and adults in the UK, according to Tourette’s Action, she hopes more work is done to understand the condition and to help the public be more sympathetic.
“So many people have it so much worse than me and I can imagine the fact it’s incurable would be incredibly upsetting for those whose life it affects daily,” Amelia adds.
“I also just feel like I don’t hear about work that’s being done to look into cures.
“Of course, there’s other conditions and diseases that are more crucial to solving first, but Tourette's shouldn’t just be brushed to the side because it can be ‘funny’.”
Tourette's Action has been approached for a comment.
Britain’s Tourette’s Mystery is on Channel 4 tonight at 10pm.
If you’re concerned about Tourette’s, please visit the NHS website here https://www.nhs.uk/conditions/tourettes-syndrome/
Do you have a story? Please get in touch at webfeatures@reachplc.com.
