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UK Disability History Month: Being neurodivergent and living with Tourette's

Disability History Month graphic

For our third interview for Disability History Month, we spoke with one of our PPI members - who has chosen to remain anonymous - about their experiences with Tourette’s syndrome.

 

What disabilities do you have?

“I’m neurodivergent and live with Tourette's syndrome, Asperger’s, obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), anxiety and depression.

“I was born with Tourette’s but wasn’t diagnosed until I was about 24. My parents had no understanding of it, and my school didn’t either and I would get in trouble. I was also bullied at school as I couldn’t stop blinking excessively which is one of the symptoms of Tourette’s.

“When I left school, I knew there was something different about me so I went to my GP and she referred me to neurology who did lots of tests, but they couldn’t find anything.

“When I was eventually diagnosed six years later, it was mixed emotions as I was heartbroken, but glad to finally be labelled with something. I remember the nurse putting her arm around me and comforting me.”

 

How does your disability impact your day-to-day life?

“Alongside the blinking, I have a vocal outburst, which is like a barking noise and it’s really embarrassing. It’s very loud, it can make people jump and is very easily misunderstood when out in public.

“People generally don’t really understand Tourette’s, like they may have seen it on a documentary on TV for example, but have never seen anyone in real life with it so will start asking what it is.”

 

This year’s theme for Disability History Month is ‘Disability Livelihood and Employment’ – have there been any challenges you’ve faced in the workplace relating to your disability?

“Yes, you don’t fit in and it’s difficult because you’re not part of the norm. There’s a lack of understanding with people not knowing who you are.

“I’ve been singled out before and have been bullied with people imitating my finger-tick.”

 

If you had to tell someone one thing about neurodiversity, what would that be?

“We are creative people and we're not any less intelligent than you are.”


Have you been involved in any research in relation to your disability?

“Yes, about two years ago, I took part in a trial for people who have Tourettes using a new technology to calm the nerves.

"I've also done a lot of Patient and Public Involvement (PPI) work. I got involved with the King’s CRF through one of the other networks I’m in, and got more involved with PPI since Covid because everything was online.”

 

Find out more about PPI at the King’s CRF.


Tags: NIHR Wellcome King's Clinical Research Facility - King's Clinical Research Facility -

By NIHR Wellcome King's Clinical Research Facility at 19 Dec 2024, 14:41 PM


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