Tourettes is NOT your joke

Posted Mon 6th Jun 2022 at 14:24
by Oliver Waite

32 year old Oliver Waite asks if you still think it's funny after reading his experience of TS.

Tourette syndrome (TS) is a neurological condition/disability that is ridiculed a lot.

Whether it’s a comedian on stage or the television, or whether it’s members of the public, or even a medical professional, it seems that everyone views Tourette’s as being an easy target and a laughable joke.

I have Tourette syndrome. Although I wasn’t diagnosed until I was 24, looking back I’ve had the symptoms of TS from about the age of 7. However, my tics were milder then. My tics started to get much worse around the age of 20, but it was not until I reached 24 that I went to the GP for a referral.

I now live with what many would call severe Tourette's.

And trust me it is not a laughable joke.

When you tell me that you wished you had Tourette's to 'get away with swearing' I want, in that moment, to tell you everything that comes with my Tourette's, to see if you really wish you had it.

So I shall openly tell you what you would get with my Tourette's.

I have such severe leg tics that I cannot stand up, let alone walk. My Tourette's means I am a wheelchair user. And whilst it is not a bad thing to be a wheelchair user, the world is very inaccessible to disabled people in general. Therefore being a wheelchair user means extra planning, missing out on many events etc.

I cannot cook or be near anything hot, breakable, or sharp. My tics have caused me burns and cuts whilst trying to cook, now I cannot cook full stop. This also includes sharps, breakables, and hot things in public, such as a candle on a table and my tics reach out to grab it.

I have regular episodes called tic storms or tic attacks. These present like a stereotypical seizure but are not. They are a part of my Tourette's. They can last for hours, and cause injuries like concussion and broken bones.

Tourette's has caused me so many injuries such as concussion, falling in broken glass, and dog poo, bruises, broken bones and more.

Plus the tics themselves are painful. I have 24/7 chronic pain due to my tics. Also, if I injure a body part and get extra pain the tics tend to then get worse in that area.

Tic attacks also mean I cannot shower alone, and must have someone in the bathroom with me, as a tic attack could result in drowning.

Due to my constant vocal tics I cannot communicate verbally with others, the only 'words and sounds' I have are involuntary vocal tics. I therefore communicate using an AAC (augmentative and alternative communication) device. This is an ipad which I type in, but I also use an eye gaze device due to the tics in my hands and fingers, which cause a lot of pain when typing and tics pressing the wrong part of the screen.

I cannot leave my flat alone partly due to my Tourette's, but also because of the abuse I get outside.

And then the tics themselves are difficult to live with. It is certainly not all about swearing. My tics also include homophobia, transphobia, racism, ableism and other offensive language and gestures. I don't mean any of it, it is all out of my control.

The tics make things like, eating and drinking, reading, watching TV, studying and many other day to day tasks and activities very difficult or impossible.

With Tourette’s comes many other things.

People with Tourette’s are more likely to have ADHD, OCD, depression, anxiety, sleep problems, sensory processing difficulties and more.

Tourette’s can create difficulties with various medical procedures where you must be still and/or quiet. I must be fully sedated for certain tests like MRI scans.

This is not some inspiring post where I overcome my Tourette's. This is a brutally honest account of what Tourette's can be like.

 

So, do you still wish you had Tourette's to just ‘get away with swearing’?

 

I will leave you with a poem I wrote a few years ago.

 

Please remember that Tourette's is my reality, not your joke

 

My neck snaps back,

Sudden.

Quick.

 

Simultaneously: my left calf tenses.

My eyes blink.

 

My eyebrows raise.

My shoulder raises.

Fingers jumping about.

 

My neck suddenly flicks to the side, and I feel a click and pain.

My jaw clenches.

 

Now my neck is constantly nodding.

Stomach clenches, pain shoots through my body.

 

Legs kick out.

Feet,

And toes start to jump about.

 

Now my right arm won’t stay still.

Oh s*>t, I punched my head! Thrice!

My finger flips up at an unaware passer-by.

 

The sniffing won’t stop.

I’ve not got a cold.

And no, blowing my nose doesn’t help!

 

Random words come out.

Some end up forming sentences.

I say the strangest of things.

 

‘You’ve got a chicken on your head’

‘F*>k off’

‘I love boomerangs’

 

The time all this happens in?

I’d say 5-10 seconds.

On repeat constantly 24/7, only the content changes.

 

I’m exhausted.

 

My muscles ache.

 

And I’m in pain.

 

Tourette’s.

My reality

 

Not your joke.

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