My Story for Dreadnaught South West

My name is Clair Beckett,  I am 30 years old and I am dance artist based in Plymouth. In May 2017 I was diagnosed with Tourette Syndrome.

I have always been involved in disability arts and have been developing an integrated dance practice for the last 10 years, creating more opportunities for disabled people.  I have spent this time fighting for the recognition of disability led work, progression routes and pathways into employment.  My ambition was to carve a pathway of inclusion and acceptance for all. Now, here I am, a 30 year old female identifying as having a disability. A strange coincidence. I’m still trying to work out if this is luck or irony.

Fortunately my creative work has always led me to surround myself with people who have similar aspirations, to maintain strong support networks and grasp every opportunity.  However, when I step out of this world, I am beginning to gain first hand experience of the difficulty in finding the right support…

I haven't always had TS but I definitely had signs as a child, a tic cough that was misdiagnosed as Asthma, and a head twitch I did when I was nervous as a teenager. My tics started to become more apparent during my mid 20s.  I noticed my eye flickering more than usual and my head tic seemed to come back.  Friends can remember me mentioning this to them from time to time, but it wasn't noticeable.

A series of stressful events caused a massive ‘tic attack’ at my Nans funeral in 2013, where I collapsed.  I was rushed to hospital.  In the ambulance the paramedic wondered whether it was Tourette Syndrome, but that wasn’t the diagnosis by the Doctors and Nurses when I got hospital, and I was misdiagnosed for a further 4 years. I was constantly afraid and confused.  I was given the diagnosis of stress, I was having a nervous breakdown and I had anxiety.  I was signed off work and I quit my job.

I have physical and verbal tics.  It changes but my my main tics are in my head, my head drops up and down, I fall over, I make sssshing sounds, I punch out, the list goes on.  I have a list of over 70 tics!

Then, one day, my mum sent me a film of a lady on a Ted Talk describing ‘Tic attacks’ and I realised my condition matched all of the symptoms. I found out that only 10% of people with TS have Coprolalia, the swearing tic that grabs the media attention, and suddenly all the pieces of the jigsaw came together with a clear picture.  Although I had recognised it as TS, GP professionals did not, so I continued my life assuming I was depressed and anxious and I felt like an inconvenience every time I went to the doctors and they sent me away with a new prescription but none the wiser. Eventually, I stopped going to the doctors. I didn’t listen to what they had to say anymore. I knew they were wrong.

After 4 years It took sheer desperation and pleading with the G.P to put me on a waiting list for a specialist neurologist… a 21 week waiting list.  After a continual struggle I paid £250 to see a private neurologist. £250 is a lot of money for me, especially when I was missing freelance work meaning I was sacrificing money for health on a daily basis.

Surprise! According to the medical experts I was, beyond question, diagnosed with Tourette Syndrome.  On the NHS website the condition is described as follows:  “Tourette's syndrome is a condition that causes a person to make involuntary sounds and movements called tics…(Iagree)  (This is where it gets confusing) It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely. There is no cure for Tourette's syndrome, but treatment can help manage symptoms.” This information is misleading.  I wondered whether the issue wasn’t the people I was seeing, but, instead, that it was the easily accessible information that was wrong? It all seems very out of date!

A recurring  theme amongst people I have met or spoken online was that health professionals have limited knowledge of TS and what treatment is available. I myself have been passed between Neurology and Psychiatry as TS has many comorbidities such as ADHD, OCD (again an oft misrepresented condition), Anxiety, Depression, Autism, etc. This means that there is a much wider picture when it comes to diagnosis and easy to mistake one for another.

I have found that access to behavioural interventions have been limitted.  My GP wouldn't send me to see a specialist once I was diagnosed.   It seemed I knew more about TS than my GP did, I was suddenly having to be the expert.  He assumed that I swore and told me it was rare to have TS as an adult? Weirdly, the only people I know with Tourette’s are adults. In my research I have found that TS often gets diagnosed later on in life actually (though it is still seen as rare). One of the oldest people I have found was diagnosed in their 70s!

In academic and medical literature the emphasis is that TS is a condition found in children. This means that adults regularly slip through the net. It is often (wrongly) assumed that children will “grow out of” TS, and will not carry the condition through to adulthood.The media often portrays TS as a fun swearing condition, in a recent Tourettes Action study Several participants felt TS was stigmatised in the media and expressed concerns about the future and prognosis with the disorder. I agree. GPs are the gatekeepers who refer you to a consultant for further assessment and there is currently no universal pathway to diagnosis.  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, diarys 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.  Who is the professional here?  I lost confidence in going to GP, they reprimanded me for not taking my meds, for not coming back to see them, for changing my address when I moved. I felt like I was going crazy.

The Tourettes Action study also showed that although most participants felt that diagnosis was important, dissatisfaction with the diagnostic process was common and many experienced poor communication from clinical staff during diagnosis. Participants felt there was a general lack of knowledge surrounding TS outside of specialist TS services.

So what do we need to do to make change???

TS needs to be recognised as a spectrum condition.  

Literature on the NHS website needs to be changed and needs to include more information about adult onset TS, and more information for adults who might be suffering with Tourettes like symptoms.  

The media needs to stop showing people with TS at their most ‘active’ and show the waxing and waning of TS and the full range of the condition, not just the swearing and comical side.  As much we we want to be seen in a positive light, TS day to day is hard!

There needs to be more funded research opportunities into the causes of TS, as well as possible methods for helping patients coping with this lifelong condition.

GPs need to be educated on the signs of TS and should not be afraid to refer a potential TS patient to a neurologist. Most people I know have had a 1-5 year wait between symptoms and diagnosis.  Finally, GPs need access to up to date information about the condition…

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!