The Label

My diagnosis cost £250 at the Nuffield Private Hospital (I did not buy a round at the pub that evening). It was necessary because there was a 21 week wait for an appointment on the NHS.

I had 3 years of on and off physical and verbal tics until we started to get somewhere. 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.  For some reason I had managed to slip through the NHS GP's net, who stated I didn’t quite fit the criteria for TS.

I must mention that my TS isn't always noticeable from day to day so this also made it a lengthy process, trying to get to the GP when I was having a bad day so they can see what was happening was tricky, and often a whole episode had passed by the time I got there.

Not knowing what was going on in my own body was beginning to have a negative impact on my work life, 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 am now on the waiting list for the right support and there is comfort in knowing I can reach out to other people with TS. I am no longer alone. There is an amazing charity; 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 when I am having a bad episode that I have Tourettes. It was difficult for people to understand before I had my "label".

TOP TIP: Don't always assume people know what TS is. I don't fully know yet, and I'm not sure there is an answer, so don't act surprised, even when you have your 'label', if people get it. Jess Thom - Tourette's Hero and my inspiration - advises that you practice a sentence that you can say to people when they ask or are concerned for your well being. You can also get an I.D Card from Tourettes Action that is really helpful (see picture).

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 only discovered it in my middle age. 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.

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).

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