Editor and Founder Vrinda Pendred discusses taking a more positive approach to Tourette’s Syndrome
Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, being a parent with Tourette’s and being a woman with Tourette’s. If you missed any of these articles, please click one of the links above to read them.
and making friends. If you missed any of these articles, please click one of the links above to read them.
At last, we have reached the end of this series, and I’d like to conclude by stressing the importance of taking a more optimistic look at having Tourette’s Syndrome.
Exploitation of the Media
When I see TV programmes about Tourette’s, they are always dramatic presentations of ‘sufferers’ on the brink of suicide, unable to function in their daily lives. Perhaps they punch themselves in the throats every few seconds, or swear and shout racial slurs over and over. I used to watch them, when I was in my late teens, still trying to figure myself out. I don’t watch them anymore. Why? They’re depressing. Worse still – they’re exploitative. TV largely makes its money by tapping into people’s voyeuristic tendencies. People love to be shocked, disgusted, horrified. I think it’s our way of consoling ourselves that all the terrible stuff happens to ‘other people’, to imagine we’re safe – like why we watch horror films. Misery sells, so TV producers go out of their way to deliver it to us.
The truth that such programmes don’t tell you is that most people with Tourette’s find ways to function in society. I say this as someone with quite a severe case of it. The last time I bothered to count my tics, I had over 40 different ones, bleeding into each other, connecting in painful, lengthening sequences. More have developed since then, but I no longer count them all. It’s not a competition. I am fortunate that I don’t swear uncontrollably or say any other such obscenities against my will. My vocal tics are more chirping and echolalia (though I suppose that could change, one day – they evolve all the time). However, on a physical level, I live in constant pain. There are many things my tics prevent me from doing. Parts of my body (my left arm, in particular) are permanently weakened / damaged. And I’m currently 37 – supposedly we’re meant to outgrow the tics in adulthood, but mine got worse. And yet I still function. I’m happily married with two children, plenty of close friends, my own home, and a really good career.
And I’m not the only one. I mentioned in the previous article that I went through a period of attending meet-ups with other Tourettics. One such gathering ended with dinner at a popular restaurant in Central London (where you see all kinds of people). One of our group that night is well-known in the UK Tourette’s ‘scene’. She runs her own organisation for helping kids with Tourette’s, got a book published (endorsed by Stephen Fry), and has been interviewed in mainstream newspapers and on TV. She has the swearing tics, and has learned to embrace and laugh about them.Another member of our group was featured in a documentary on Channel 4. Another recently won the first heat in a battle of the bands, with a chance to win the grand prize of playing at the annual Bloodstock metal festival up in Whitby. (Sadly, COVID-19 lockdowns put that to a grinding halt.)
Every one of us in that room was fully functional. It didn’t matter how severe the tics – we all had good lives. We were all what I would call ‘normal’. And after a while, I didn’t even notice the swearing, because the conversation was good and the laughs kept coming. I reckon other people would have the same experience if they gave such people a chance. And if more people gave others that chance, I think you’d see fewer people sobbing on the brink of suicide, unable to leave their house for fear of public abuse.
Because I know that fear does exist. I know because that same evening, the restaurant staff moved us to a private table in the basement room, away from the other diners. I kind of get it. If there were children, you wouldn’t want them hearing random obscenities, even if they weren’t intentionally spoken. Still, the experience of blatant, undisguised segregation really hit me. Little did the restaurant know they were sending a minor celebrity to eat in the basement!
But looked at another way: we got a private room and could be as noisy as we liked! And this is my point. My personal experience is that these days most people with Tourette’s learn how to live with it. We’re a remarkably resilient, adaptable lot. I think it’s one of these things, like trauma, where it either makes or breaks you. In my case, and in the case of many others I have met or spoken to online, it certainly did not break me.
Elegant Variation
If you look online, you can find all manner of studies suggesting that people with Tourette’s have impaired cognitive functioning compared to ‘healthy’ control subjects. (What does that even mean? I ask.) I don’t buy this. My son and I have both been invited to sit the official test for membership in MENSA. On the other hand, I have heard some people with Tourette’s complain that they’ve heard suggestions that the condition is linked with higher IQ and yet they feel pretty average, or maybe they’re even struggling in school.
There are also plenty of suggestions that Tourettics tend to be highly creative. I think there must be some truth in this, as everyone I’ve ever met with Tourette’s fits this stereotype – writers, musicians, artists, and so forth. However, I’m sure there are Tourettics out there who would find this stereotype frustrating, if they aren’t personally very creative – and, of course, there are plenty of creative people out there who don’t have Tourette’s!
Tourette’s is also one of these things that can make a person deeply introverted, hiding themselves away for fear of judgment. For others, the phrase ‘if you can’t hide it, decorate it’ seems to apply – they integrate their tics into their daily mannerisms and are extroverted as can be. Some of us even learn to laugh about our tics – for instance, there are plenty of tweets and social media comment threads full of people sharing their most hilarious shouted-out expletives.
What does all this tell us? That people with Tourette’s are as varied as people without Tourette’s. All that said, I do think Tourette’s comes with (or leads to) a certain personality profile. I don’t mean we’re all the same. I mean having Tourette’s shapes each of us as individuals. My unique chemical makeup affects more than my motor movements; it affects my emotional responses, how I think, who I believe I am. And now that I’m an adult, the experience of having Tourette’s has played a key role in shaping how I think, feel and react.
Final Thoughts
The medical world is determined to find a cure for Tourette’s. Worryingly, I’ve even heard talk of locating the Tourette’s gene – something that could only lead to things like Tourette’s tests on developing foetuses, and genetic modifications to remove the gene. Eradicating what is perceived as disability can be dressed up in any fancy language you like, but it’s still eugenics. I would not be who I am today without Tourette’s. If we found a cure tomorrow, I would not take it – because I like who I am, and that ‘cure’ would kill the person writing this article. Likewise, there is no way to know just how much we might change the whole of society if we were to isolate and eradicate the Tourette’s gene for all time.
There are those out there who will disagree – who would absolutely take that imaginary cure. That’s fine. Like I say: we’re a varied lot. And don’t get me wrong: there are some people out there genuinely on the brink of suicide because of their condition. But television programmes showing only the bleakest, darkest side of Tourette’s help no one. They don’t teach the world what Tourette’s is really like. They don’t encourage parents coming to terms with their child’s diagnosis. And they certainly don’t help that child accept their situation and themselves.
It’s time to start showing more people who have integrated Tourette’s into their lives and been just as successful as their non-Tourettic peers – because there are loads of us. Tourette’s doesn’t have to be a disability. For some, it may be. For most, it can be lived with. I don’t say that as a detached doctor or a parent who has watched it all from the outside. I say it as someone who’s done it.
At long last, we’ve reached the end of this series! As we come to the end of what has been an incredibly strange year (2020), I want to wish you all well and best wishes for a significantly better 2021. Be sure to subscribe to this blog so you don’t miss any future articles.
And finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app. US Readers UK Readers
Until next time….
Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.
Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder. In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.
She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.
