A mother of two from Southport has described how living with Tourette syndrome has left her feeling "on a knife-edge," as she calls for greater public understanding of the condition after repeated misunderstandings in everyday life, including incidents where police have been called.
Roisin Reeve, 38, was diagnosed with Tourette syndrome at 25, although she says she had symptoms from childhood. The neurological condition causes involuntary movements and sounds known as tics, which can vary in severity over time.
Roisin explained that her symptoms started off relatively mildly but worsened significantly as she got older.
She told the ECHO: "At first, it was just the odd leg twitch and throat clearing. Then it got increasingly worse. I punch myself in the face and it hurts, I pull muscles, I've cracked ribs. The reality isn't funny; it's painful."
"I developed coprolalia and that became really overpowering. I get accused of faking it or saying stuff because I can get away with it."
Coprolalia, a rare vocal tic linked to Tourette's, involves involuntary use of socially inappropriate or offensive language and only affects a small proportion of those living with the condition.
Roisin says misconceptions about Tourette's often lead to hostile or distressing reactions from the public, including confrontation in the street and people questioning her parenting.
"I've had people shout at me in the street, people telling me I shouldn't have my children, people ringing the police on me, threatening to ring social services," she said.
She recalled one incident on public transport where she was shouted at by another passenger. "I've had someone scream at me in the face on the bus. He said 'I've not come on this bus to listen to you so you need to shut up.' I was just stunned."
On another occasion, she said police were called to her home while she was with her daughter, an experience she described as distressing and confusing.
"I don't know why exactly the police were called because I was never told. I can only assume they overheard my tics and didn't like it," she said. "But that's not a reason to waste police time and cause more distress."
She added that misunderstandings about her condition have left her feeling uncomfortable in public, with people sometimes treating her as if she were a child or assuming she needs a carer.
"I don't often go out on my own. There was a time when I didn't leave the house at all. I was scared of what was going to happen," she said.
"It hurts when people accuse you of meaning what you say, and that damages our mental health more than people realise. When I leave the house, I genuinely never know what I'm going to face that day. You're very much living on a knife edge," she said.
She also said she is generally open to questions from the public, but finds being stared at particularly difficult. "I've got no problem if people want to ask me about it. But I don't like when people stare," she said.
Roisin says there have been moments where the stress of public reactions has made her consider withdrawing from going out altogether, but she remains determined to keep speaking up to raise awareness.
"There's times when I want to throw the towel in and never leave the house again. But I don't want people to push me to that," she said. "Too often, people see the tics but don't see the impact they can have on everyday life. My hope is that by sharing my story, people will better understand what it is like to live with Tourette syndrome."
