A mother of two living with Tourette syndrome has spoken out about the challenges and misunderstandings she faces daily, hoping greater awareness will reduce stigma. Roisin Reeve, 38, from Southport, was diagnosed at 25 but began showing symptoms as a child. Tourette syndrome is a neurological condition causing involuntary sounds or movements, known as tics.
Her symptoms started mildly with leg twitches and throat clearing but worsened over time. “I punch myself in the face, pull muscles, and have cracked ribs. The reality is painful, not funny,” she said. She also developed coprolalia, a tic involving involuntary obscene language, which affects a minority of those with Tourette syndrome.
Roisin faces public backlash: “I’ve had people shout at me, tell me I shouldn’t have my children, and call the police.” Once, on a bus, a man screamed at her to shut up. Police were also called while she was home with her daughter, arriving with backup. “I can only assume they overheard my tics. It’s not a reason to waste police time and cause distress,” she said.
She feels misunderstood, often spoken to like a child or asked if she lost her carer. “I didn’t leave the house at all for a time. It hurts when people accuse you of meaning what you say. It damages mental health more than people realise.” She added, “When I leave the house, I never know what I’ll face. You’re living on a knife edge.”
Despite wanting to give up, Roisin continues speaking out. “Too often, people see the tics but not the impact on everyday life. My hope is that by sharing my story, people will better understand what it’s like to live with Tourette syndrome.”
