Hi, my name is Clair Beckett. I am a 31 year old woman, I am a dance artist and I have Tourette Sydrome. I dabble in film making, vlogging, and public speaking. Through my art I advocate for people with TS in my own creative way.

For my first blog, I want to talk about my journey to diagnosis and how I became someone who suddenly had a label, a label that is very often confused with the cartoon persona that the media portrays on television.

In May 2017, at 30 years old I was diagnosed with Tourette Syndrome. I remember in my 20’s watching a documentary about Johnny Davidson a young man with TS, I really admired his strength. I never thought that one day in the foreseeable future, I too would have this condition, and we would be moving in similar circles.

My diagnosis cost £250 at the Nuffield Private Hospital. I battled with the idea of paying this money as it was technically half a months rent or work on my car, but this needed to be done. It was necessary because there was a 21 week waiting list for an appointment on the NHS and I could not wait that long, I was desperate.

Prior to this life changing appointment I had experienced 3 years of on and off physical and verbal tics. I categorise my tics as follows:

Physical including a whole spectrum of movements ranging from punching the sky and dropping to the floor to unseen muscle spasms and eye flickers.

Verbal including shushing, throat clearing, and uncontrollable screaming or grunting, sometimes the occasional swear word.  

For some reason I had managed to slip through the NHS’s net. My GP did not feel that I fitted neatly into the ‘tic’ box criteria for TS. As an adult, it is still seen as rare to be diagnosed at this age. I must also mention that my TS isn’t always noticeable. This has made it very difficult trying to get to the GP on board, timing my appointments on a ‘bad’ day was almost impossible. I needed them to see me ‘peform’ my tics to prove my sanity, and their authenticity. Often a whole episode had passed by the time I got to the appointment or I had to be carried in by my parents and demand an appointment in that very moment.

Not knowing what was going on with my own body was beginning to have a negative impact on my work, home life, and my mental health. I was done with being misdiagnosed, doctors looking at me and not knowing what to do, and I wanted answers.  I was sick of being told I had anxiety, I was stressed, I was having a nervous breakdown or I was exhausted. These were not a diagnosis, but were actually symptoms of my TS.

I was not scared of having a label, because I knew that once I had clarity on what I was experiencing I could start to accept a slightly new way of living and embrace it. For 10 years I have been working in inclusive environments, and those experiences gave me confidence that life didn’t have to change too much and I could continue being awesome 😉

Now that I have this label there is comfort in knowing I can reach out to other people with TS. I am no longer alone. I identify proudly as a disabled woman, because I am supported by my loved ones and I live by the Social Model of disability.

Since May 2017 (I am coming up to my 2 year Tourette birthday!) I have made incredible connections to wonderful charities and fellow ticcers. There is an amazing organisation; Tourettes Action, who are always at the end of the phone and really helped me in the first stages of accepting my diagnosis when I needed a cry and a chat.

I can now clearly communicate to others that what I am presenting is Tourettes. It was difficult for myself and other people to understand before I had my “label”.

It was a challenging and difficult journey for me to reach my diagnosis as I didn’t present the most common attributes of TS in my childhood or adolescence, and I only discovered it in my middle age. I only realise now that some of my habbits as a child could have been tics.

Here are my top tips to help you on your own diagnosis journey:

1. Don’t worry, you’re not alone!

2. Be persistent, be strong, keep going back to your G.P, ask to see a specialist neurologist. Remember you are entitled to a second opinion, you only need to ask.

3. Write down everything. Log your tics in a diary. Record information such as when they happen most, when they don’t happen, how it makes you feel and what they make you do. Take this to any appointments you go to, and ask others around you to help jog your memory.

4. Don’t hide, talk to people and get out there.

5. Film your tics. Its weird and uncomfortable and upsetting to watch back. However, it’s good to have a log when you go for appointments – especially if you aren’t ticing at the time of speaking with your G.P.

6. Get in touch with Tourette’s Action, they will offer you advice and link you up with local support groups. They have useful fact sheets you can print out for your G.P or work place.

7. Don’t put it off. The longer it goes on, the more stressed you become.

8. Tell your work what is going on. Discuss arrangements that may help you to continue to perform at your best. By doing this you are spreading awareness of TS and educating the business you work for to offer an inclusive environment.

9. Take some time out to let it sink in! At least run a bath!

10. If you are at a loss with your doctor – seek private medical help. It is expensive but you are worth it (you would spend that much or more on a car service).

TOP TIP: Don’t always assume people know what TS is. Jess Thom – Tourette’s Hero – advises that you practice a sentence that you can say to people when they are concerned for your well being or have a question around TS. You can also get an I.D Card from Tourettes Action that is really helpful (see picture).

If you would like to get in touch with me, please feel free to email me clairbeckett@hotmail.co.uk or comment below!