Tourette's Syndrome is a condition that causes a person to make involuntary sounds and movements called tics. Photo / Jeremy Perkins, Unsplash
OPINION:
Three summers ago I went to see a neurologist and during the course of the consultation for another health matter, he diagnosed me with Tourette's.
I remember being somewhat shocked when he looked up, smiled, and said: "Well, you have got Tourette's. It is an interesting condition and we can talk more about it later if you want." I think deep down I knew it. There had been frustrating nights googling: "Why do people tic?", and trying to get clarity on my symptoms, but still, the formal diagnosis was a shock.
Tourette's – or Tourette's Syndrome – is a condition that causes a person to make involuntary sounds and movements called tics. It normally appears in childhood and for a large number of people it resolves as they develop, but it would appear that the pandemic has brought about a wave of ticking youngsters. Specialist London tic clinics have seen a near doubling of referrals for sudden onset complex tics, especially among teenage girls.
My own diagnosis with Tourette's came as an adult, but has made sense of things retrospectively. I recently looked through my late mother's diaries and, sure enough, found a smoking gun tucked into her 1984 diary: "Charlie is ticking, I took him to the doctor." No one ever suggested to me that I might have Tourette's. I knew I ticked but had no idea why and worried that it meant I was deeply weird or deficient. Consulting a few school reports confirmed that at prep school I chewed my shirt, fidgeted and had trouble concentrating. Then as I grew up there were bouts of anxiety and the odd dash of OCD, a condition heavily comorbid with Tourette's.
I left the consultation with the neurologist slightly alarmed but oddly excited. Was my late thirties going to be the moment when I finally made sense of the slight oddities in my mind that I had always been aware of, but never quite addressed head on? And the faint feeling that my brain sometimes runs down slightly different tram lines to the brains of most of my peers; not enough to preclude friendship but enough to invoke a very slight sense of otherness? Occasional loneliness even?
In the case of OCD, people have a compulsive thought (usually unpleasant and fatuous like "Did I just cause a car crash?") and which only an obsessive response (eg, touching something three times) can address. I am not troubled by OCD now, however my experience of Tourette's is linked but not identical. Tourette's produces a premonitory urge. This is a very, very hard thing to explain. It is not clearly articulated like an obsessive thought, but is just unpleasant. The best way I can describe it is a little bit like the sensation you get when you need to pee but there is nowhere to go – except it is all happening in your brain.
A premonitory urge requires a tic. My tics are linked to my neck and to my diaphragm. When I tick my head arches back in a violent manner, which can hurt my neck. Sometimes I can confine it to my shoulder. Also a very odd thing happens with my diaphragm, which is like a half cough, half tic. It's incredibly hard to describe but imagine exhaling and pushing all the muscles in your diaphragm in an odd direction, which other people can't see. It's physically exhausting and far from fun.
A Tourette's diagnosis requires a motor tic and a vocal tic that last for a given amount of time. And coughing can be a vocal tic, as can doing weird things with your diaphragm, as my smiling neurologist pointed out as part of his coup de grace on the diagnostic front.
Tourette's is a serious thing that afflicts a large number of people, perhaps over 300,000 in the UK, according to the charity Tourettes Action. Billie Eilish has spoken out publicly and very helpfully about her own experience with Tourette's. She has talked about the tics that no one else can see. These are the ones that in my case cover a range of muscles in the arm, shoulder or diaphragm. When they occur in a rapid-fire way when I'm mid conversation they can be very annoying and tiring, but the person I am talking to will be none the wiser.
There are also the larger, unmissable tics. I can suppress these to some extent – for example I can hold off ticking in front of a camera or when giving a talk but they can't be suppressed forever – and periods of resistance can lead to periods of excessive ticking later. Treatment is a thorny issue. There is no cure, or simple way to manage the condition. I have not had any treatment myself. Some experts believe that CBT can help and Tourette's Action provides information on medication that blocks dopamine receptors as this brain chemical is implicated in Tourette's, though it is not clear how. It's a complex area, not yet fully understood even by specialists. Personally, I have found immersing myself in nature and art helps me manage my stress levels, and reduces the tic urge.
I am genuinely grateful that my Tourette's is always worse when I am tired, because it means it is not always equally bad. Generally it is also worse when I am either stressed or excited about something. When these things come along all together it can be appalling. At its very worst Tourette's can feel like having a thousand flies landing on you constantly. My poor wife and children have ample chance to witness the ticking frustrated spectacle that ensues. Sentences cannot quite be got out between ticks. Everything is hard and haggard.
Only a tiny percentage of people with Tourette's shout things out (coprolalia). Looking back I remember I ticked fairly consistently through my childhood and then the cloud lifted for my late teens and early twenties. In lots of cases people grow out of Tourette's at precisely that point, but mine didn't truly lift, it was more like a brief change in the weather.
Sadly I lost both my parents in quite quick succession, there were some traumatic moments and my twitching seemed to explode. It hasn't lifted properly again since.
Diagnosis has helped eviscerate some of the more idiotic things that lurked in the darkest recesses of my mind. For example, ticking is not a hidden weakness of character or cravenness. It is not a punishment. Rather, it is a neurological disorder which is thought to be broadly linked to a breakdown in communication between one part of your brain (the amygdala) and another (frontal cortex).
Moreover, it is part of a family of neurological conditions that range from autism to ADHD, which is not to say that if you have Tourette's you have either disorder. Those with Tourette's are part of the family of people who we now describe as neurodiverse and I wear that badge with pride. Simply knowing that you are not alone brings its own kind of relief. Now I quite often tell people I have Tourette's, even by way of explaining what's going on with my neck at dinner parties.
Thankfully I am no longer troubled much by OCD or anxiety. I seemed to outgrow both. But I can't seem to shake Tourette's. I do know now that fighting the way you are is pointless. My diagnosis and the kindness and acceptance of my wife and family have helped hugely.
Tourette's can be unbelievably frustrating and to some extent drains the pleasure you might expect from even simple activities. But as a family we have discovered that in life there is always room for humour. Tourette's has not stopped me working. I run a successful business as an art dealer, write books and newspaper articles. I consider myself fortunate.
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