Clair Beckett

Story Number:Story-006
Themes: Medical, NHS, Tourettes

So my name is Clair Beckett, I’m 30 years old and I am a dance artist based in Plymouth and in May 2017 I was diagnosed with Tourette Syndrome.
I’ve always been involved in disability arts and have been developing an integrated dance practice for the last 10 years, um, particularly creating more opportunities for disabled people. My ambition has been to carve pathways of inclusion and acceptance for all. And now, here I am, a 30 year old female identifying as having a disability myself. Which I find a really strange kinda coincidence. Um, and I’m still trying to figure out whether it is luck or irony.

I haven’t always had Tourettes but I definitely had signs as a child, I had a tic cough when I was five years old that was misdiagnosed as Asthma, and I had a head twitch when I was a nervous teenager.

My tics became stronger and more apparent in my mid twenties. One day, my mum sent me a film of a lady on a TED Talk and she was describing ‘Tic attacks’ and I realised my condition matched all of the symptoms that she was describing. I found out that only ten percent of people with Tourettes have Coprolalia, which is the swearing tic that grabs the attention, um, of the media [coughs], and suddenly all the pieces of the jigsaw came together with a much clear picture for me. Although I had recognised it as Tourettes, uh, GP professionals didn’t, so I continued my life assuming I was depressed and anxious [coughs] and I felt like an inconvenience every time I went to the doctors and they sent me away with a new prescription each time but I was none the wiser of what was really happening.

The media often portrays TS as a fun swearing condition; in a recent Tourettes Action study Several participants felt Tourettes was stigmatised in the media and expressed concerns about the future and prognosis with the disorder. Which I agree. Many patients are self-diagnosed after they, their parents, other relatives, or friends read or hear about TS from others. We then have to build a case of videos, diaries and case studies to present to our GPs. When you persistently go back with the same issue, I have have found that they become offended [coughs]. Who is the professional here?

So what do we need to – to change? I think that Tourettes needs to be recognised as a spectrum condition so that each person is seen as an individual. Literature on the NHS website needs to be changed. The media needs to stop showing people with Tourettes at their most active and show the waxing and waning of Tourettes and the full range of the condition, not just the swearing and comical side. There needs to be more funded research opportunities into the causes of TS. GPs need to be educated on the signs of TS and should not be afraid to refer potential patients to a neurologist.

I hope that this story will shed more light on the experience of TS and that more funding will be allocated to TS research and training for doctors, teachers, parents…everyone!