In the latest edition of our award-winning series The Invisible Struggle in Irish Country Magazine, Acting Editor Niamh Devereux investigates Tourette Syndrome and shares one Irish man’s personal experience of living with the neurological condition.
Tourette Syndrome, a complex condition characterised by motor and vocal tics – sudden, repetitive movements or sounds that occur involuntarily – affects approximately 1 in 100 Irish people, with symptoms usually beginning in early childhood. For many, these tics continue into adulthood.
Although it is commonly believed that Tourette’s involves uncontrollable swearing, coprolalia – the involuntary use of obscene or socially inappropriate language – is in fact a rare symptom, affecting just 10-20% of people with TS. More common are uncontrollable movements or noises such as blinking, facial movements, head jerking, throat-clearing, sniffing or repeated words.
In the May|June issue of Irish Country Magazine Acting Editor Niamh investigates the often-misunderstood condition of Tourette’s syndrome. As well as chatting with consultant paediatric neurologist Dr Deirdre Peake about the syndrome, Niamh shares James Mac Inerney’s story, a 32-year-old makeup artist from Abbeyleix, Co Laois living with Tourette’s.
While starring on season two of BBC/Netflix series Glow Up in 2020, James opened up about the condition and was inundated with messages from parents and people living with it. This planted a seed for James. “I started questioning my identity and my relationship with Tourette’s,” he says. “Should I talk more about this subject? Are people curious to learn? Can I find ways to better help myself and others?”
In 2022, he began an online series, Tourette’s Tuesdays, challenging the taboos and misinformation surrounding TS, exploring the science behind intrusive behaviours, and connecting with people who share similar forms of tics, Tourette’s and coprolalia. Peeling back the layers required for this kind of vulnerability set James upon a journey of healing.
In the full feature in Irish Country Magazine, James shares the symptoms he first began showing at three or four years old and the long struggle he faces to receive a diagnosis. James also emphasises the importance of support when navigating life with Tourette’s: “Living with an incurable condition that manifests differently for each individual can feel like an uphill battle, both personally and socially”.
“I have often benefited from Tourette’s Action in the UK when working abroad on projects. Being able to speak with an advocacy officer, therapist and family or school welfare officer has contributed to my understanding and emotional support”.
He continues: “I believe Ireland as a society is more than capable of establishing a similar organisation and support system. Simply put, we don’t need to reinvent the wheel – we can learn from what Tourette’s Action in the UK already does”. James points out that with increased support and awareness, people may be encouraged to seek a diagnosis as early as possible. Although he acknowledges that there is still work to be done to help lighten life with TS, online advocates like James – who has 244,000 followers on his Instagram page – are making a huge impact.
“I regularly remind myself of my purpose: helping a child, teenager in school, friend or family member with TS who may be having their worst day right now know that they are not alone”, he says. “I can now say that everything I endured growing up strengthened my resilience and compassion in helping other people living with TS today”.
For the full feature, including more on the above story and what has helped James with TS, as well as advice from consultant paediatric neurologist Dr Deirdre Peake, pick up the May|June issue of Irish Country Magazine.
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