#Itsnotwhatyouthink….. Tourette Syndrome

Posted Mon 6th Jun 2022 at 14:54
by Clare Scully

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Mum Clare Scully shares her rollercoaster journey from diagnosis to acceptance.

It’s fair to say that when we first received a diagnosis of Tourette Syndrome (TS) in our family, my first thoughts ran to the negative stereotypes I’d often seen portrayed - often as a joke. I felt protective, scared, and angry all jumbled into one. But more than anything, I felt relief that we finally had a “diagnosis”.

Years on, my understanding of this complex condition still feels pretty fledgling and challenges me regularly. I think the poster raising awareness about TS sums it up perfectly - tics (involuntary, recurrent movements and sounds) can be just the tip of the iceberg for those managing the condition.

In my experience, TS has brought laughter, pain, annoyance, frustration, and a sense of belonging. Looking forward, I also feel a sense of hope.

During my working day, I review developments happening across the healthcare sector. When I look at neurodiversity, including neurological conditions such as TS, I can see the huge potential that scientific advances and digitally enabled care have to revolutionise support for this condition in a sustainable way.

I also look at how inclusivity is evolving in workplaces, across education settings and broader society. Though there’s a way to go, I feel more hopeful and confident that the negative stereotypes I initially jumped to are being overturned, and that individuals managing TS do not need to be held back by their tics. 

So my request for Tourette’s Awareness Month? Learn a little bit more about this often-misrepresented condition:

• TS often peaks during early teen years - it is suggested than one in 100 school aged children in the UK experience tics
• It is estimated roughly 10-15% of people with TS experience coprolalia (involuntary obscene language)
• While it can be possible to suppress tics, this can be exhausting.

And if you are an employer, teacher, loved one or experience tics yourself, reach out to organisations such as Tourettes Action which are helping to raise the profile of and advocate for TS.

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