‘I had no idea, I just assumed you were a bit weird’ said one friend in response to my first blog about living with Tourette’s syndrome. ‘Cheers…and they aren’t mutually exclusive’, I replied.
I can’t think of many conditions that have gone from obscurity to part of popular culture for quite such inaccurate reasons. The public’s understanding of the complex web of effects and associated disorders is so limited I imagine we’ll be having a referendum on it any day now. Despite writing regularly about mental health, it took me until late 2014 to write about my own experiences, living with it largely in secret for 33 years.
It had seemed like time for a change, partly due to struggling with life away from Tourette’s, but ultimately to try and raise awareness and tell what I hope is an interesting story. I had feared everyone knowing would exacerbate the symptoms, with the most manageable times of my life coming when I’d managed to suppress it to the point of forgetting it existed. Despite many positive responses from people, physically things did deteriorate. This could be a coincidence but suddenly even when I was having a good day, even when I had the energy to suppress it, I knew people were looking for signs of it. When meeting new people, I knew there was a lot of information online that could lead to judgements before having met me. It could even, in these stalky days of Tinder…cost me dates. I hadn’t prepared for consequences quite so serious.
The reaction to that first blog was quite varied. Some asked about it, some didn’t, some were surprised, some weren’t. There’s no right response and nothing I expected or even preferred, although a vague degree of interest is quite helpful for future blogs. Many people couldn’t really understand the problem because they hadn’t seen it for themselves, or had only witnessed limited effects. For years when at its most severe I would shut myself away, not through embarrassment but as the most effective way to cope physically and mentally. Allowing the impact on my body and mind to settle down could take an hour, an evening, a day, or longer. I would miss a lot of events, cancelling on people saying I was ‘ill’, and no doubt seeming like a hypochondriac.
This website is intended to explain Tourette’s in more detail and how it impacts on areas of life we all experience. It’s not about sympathy, or even suggesting this is everyone’s experience. Some of my experiences will be more about me than Tourette’s, and I don’t always know where that division lies. Some people with Tourette’s will experience these issues far more severely than me, some less so or not at all. I hope it will provide a clearer picture of what the condition can mean, but more importantly that we all have problems below the surface and can learn from others’ experiences. I will cover a range of topics over the next few months but if there’s any areas you’d like included, or you have any questions then please get in touch and I’ll do what I can to include them.
I have been reticent to delve further into the subject at times. In some ways my health could be boosted by drawing a line under it and not mentioning Tourette’s again, yet it would be a mistake to close the door now when there’s an interesting story to tell and a great deal of misconception to fight. I’ve been ambivalent since people have known about my condition. I am glad so few noticed over the years, but frustrated that successfully suppressing it for long periods of time has limited people’s understanding of the condition.
People have asked what makes Tourette’s worse and I rarely know how to answer as there are so many contradictions. I’ve struggled badly when alone in a room fairly relaxed and been absolutely fine in big crowds and potentially stressful situations. For me at least, it’s an unpredictable condition and a bad day can come along at any time. The main exacerbating factor seems to be instability in life, which makes things more challenging for all of us. A comfortable home, a happy relationship and successful career would all help my Tourette’s and I don’t think I’ve ever had all three at once. Actually I’m not sure I’ve had two at once. While it’s important to keep testing yourself, to live outside of your comfort zone to prevent the Tourette’s taking over, that solid foundation to fall back on is vital.
It’s all too easy to silence people with mental health problems or neurological issues, assuming that dictates their thoughts and opinions. Like anyone else, I’m influenced by a million different factors from people, experiences, places and culture. Tourette’s is a consistent backdrop to all these things, shaping my perspective perhaps but you’ll find as many diverse personalities and opinions in the world of Tourette’s as you will in depression, OCD, tennis elbow, or even you oddballs who think there’s nothing wrong with you at all. In an age when ignorance, intolerance and compulsive lying make you a presidential frontrunner, surely we can find time to listen to the opinions and needs of people with health conditions too.
I’ll repeat one part of my original blog – it’s less than 10% of Tourette’s sufferers that actually have coprolalia, the involuntary swearing and socially inappropriate comments that have become synonymous with the condition. I understand why TV commissioners thought that was more interesting, but there comes a time when you need to provide an accurate picture, and in this case it can be just as interesting and entertaining…right? Tourette’s can involve swearing yes, but it can also be random noises, words or phrases, or in the case of Jeremy Hunt, involuntary lies about the NHS. Beyond our esteemed politicians, the majority of pain in my life comes from the physical impact of Tourette’s, which I will discuss more specifically in the next blog.
It can be difficult to explain to people what the true impact of Tourette’s is, and I now realise it must be the same with a whole host of conditions. If you can appear to cope well in public then people will assume it’s not that serious. Yet each week I’ve needed a day or two out to recover if life is particularly busy. The Tourette’s calms down and I’m ready to cope again. This usually feels like extreme fatigue, and perhaps it can come across as laziness, but all I’d say is, I’ve gained nothing from it. It’s not some excuse to benefit in any way, I’ve merely missed a large portion of my life and had my social and working life limited. Yet I’m lucky I’ve found a coping mechanism at all, as many others will have no respite and live it 24/7.
Many of us look back bewildered and embarrassed at how certain groups of people have been treated in the past, yet we continue to make mistakes. Too often mental health issues are overlooked, or we dismiss the abilities of those suffering their effects. The stigma is something we can fight right now, it doesn’t require expensive medical research and scientific breakthrough, just empathy and a shift in viewpoint. Beyond mental health and neurological conditions like Tourette’s, there remains a lack of understanding and often a suspicion of conditions we can’t see clearly. I remain positive and despite what mainstream media would have you believe, there is clear evidence of moral progress throughout the decades. Tolerance, understanding and compassion increase, while prejudice and ignorance decline. Yes, I did write that before the Brexit vote, but there will always be short-term setbacks even in developed countries.
It would be counterproductive to write about the problems of assumption in society and then write off an entire group as ignorant or racist myself. I’ve not seen any valid reason for voting leave, but I do understand some of the motivations people might feel, from a general feeling of desiring change to the opportunity to topple a Prime Minister. For me, a referendum is a terrible idea from the start, on any subject let alone a such a complicated and important one. I’ve studied the EU more than many and still wouldn’t feel qualified to decide, with my disposition always being towards cooperation and working with other countries regardless. Why is this relevant to a Tourette’s blog? Well, rather than cynically shoehorning in my Brexit opinion over a week late, it’s about misconception. I had already written about the problems of people viewing matters in such black and white terms, making assumptions about illnesses and complicated conditions they can’t necessarily see. Yet here we have a government asking the public to make a simple yes or no decision on an extremely complex issue. It does not encourage thinking in shades of grey.
Misconception can be fought through education, inspiring curiosity and changing mindsets. The media don’t always seem willing to aid this cause, but we can help each other. Whether it’s Tourette’s syndrome, a mental health condition or any other problem you are struggling with internally, we can all help by being more patient, open-minded and above all, continuing to read my blog.