Tourette’s took its toll on my mental healthcare
Richard reveals how the condition led to him withdrawing from life, and says that it was only when he started opening up to loved ones that things started to improve.
It’s a little ironic to find myself in a cinema watching the terrific biopic I Swear about Tourette’s Syndrome campaigner, John Davidson (played beautifully by Robert Aramayo). Not, of course, that a cinema is an unusual place to see a movie. But that, for John with his aggressive vocal version of TS, movie theatres - like the libraries he fantasises about visiting in the film - are almost certainly off-limits.
But it’s 10.30am on a weekday morning at Everyman Reigate and, being the only one here for what is now essentially a private viewing, I have the luxury of blinking, scrunching, twitching, wriggling, squirming, sniffing and, yes, laughing and crying, as much as I like.
It wasn’t until I was 32 that I was diagnosed with Tourette’s Syndrome. Not the “swearing” kind (Corprolalia) the most obvious characteristic of John’s condition. But the kind that produces other involuntary movements and sounds – the tics, tensions, hums, and sighs that I share my life with. But why had my TS taken so long to diagnose?
“Even after my diagnosis, and a brief period of sharing the news with close friends and family, I packed it all away again.”
Well, until that moment, 22 years ago, I hadn’t told anyone about any of the things that troubled me. Not one thing, to one person. Even after my diagnosis, and a brief period of sharing the news with close friends and family, I packed it all away again. While the world was beginning to reach out, to demystify and destigmatise conditions such as Tourettes, I was backing away.
Vulnerability and weakness were promoted as positive characteristics, even strengths. Which, I felt, was all very well in theory. But in practice? For me? Or for others like me? Business owners, bread winners?
As an employer and a parent, sometimes you are required to be robust, resolute, reliable. You want to give staff comfort about the viability of the business, about their jobs. Your family, reassurance about their home, security and maybe even that year’s all-inclusive summer holiday to Kos.
You might want to dangle your leg over the side of the wheel, the sole of your shoe scraping on the soft tarmac, slowing its revolutions, until you can leap off. But for many of us the prospect of stepping off that wheel is terrifying.
So, you stay on the wheel – therapy or medication or drink, or a change of diet or a new hobby or religion or a pet or an overdraft extension keeping you there. Sometimes, mostly in fact, nearer the centre, a little giddy but stable, eyes bright enough, living, or at least existing. At other times, less often, clinging to the outside rail, woozy and nauseous, puffy faced, tearful, close to letting go.
“The involuntary tensing and squeezing of my pelvis or abdomen caused debilitating indigestion and cramps that led to my mental health worsening.”
But by August 2024 my Tourette’s – always worse in the oxygen-starved heat of summer – had become unbearably intrusive. My hand tried but failed to cover escalating scrunches, pouts, and eye rolls. The involuntary tensing and squeezing of my pelvis or abdomen caused debilitating indigestion and cramps that all led to my mental health worsening.
My usual defence, finely tuned but exhausting “masking” (the physical suppression of tics) was beginning to fail me. And this was all taking a huge toll on my mental health, and I started to withdraw from those around me.
My general health had also begun to slump, then crumble. Previously once-fortnightly tension-headaches now struck almost daily. My blood pressure spiralled. I didn’t want to go to work. Or anywhere really. I hadn’t spent a night away from home in over 15 months.
It got worse before it got better. One day, staring blankly at the anarchic cubism of the desktop on my MacBook, elbows on the desk, chin resting heavily on cupped palms, right foot shaking uncontrollably, I knew something radical was required. And having finally opened up to my Mum and Dad, and with their love and support, and that of my staff, I stepped off the wheel. Just before I was thrown off.
At last opening up to my family, and with their unconditional love and support guaranteed, I had the confidence to talk to colleagues and, with their support, finally step off the wheel. Before I was thrown off.
I’ve worked for myself since I was 28, so haven’t had a regular job for 26 years. I’m now searching for a different way to live, and a new way to make a living. I want to write, to be an author. But it’s a work in progress, and a long shot.
Happily, the headaches have nearly gone altogether; the tics have eased. My blood pressure is on the way down. I’ve been diagnosed with moderate to severe ADHD and have an assessment for autism pending. I’m assured that, even in my mid-50s, there is some help available. So, I’m giving it a go. I feel cautiously positive about the future.
"The challenge is to change the environment those with TS live in, so that it doesn’t have such a devastating impact on our mental health."
Ultimately, though, the cruel truth is that Tourette’s Syndrome is incurable. The challenge – or opportunity –is to change the environment those with TS, and other similar conditions, live in, so that it doesn’t have such a devastating impact on our mental health. To convert attitudes and perceptions, through education and information. To transform the landscape. And that is what John Davidson (MBE) has dedicated his life to.
But there’s still much work to be done. On the very rare occasions I’ve told anyone I have Tourette’s, the most common response has been: “No you haven’t”.
To which I sometimes, by which I mean always, reply: “Yes I f**king have”.
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