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Guest blogger: “I swear it isn’t true”

EDITOR’S NOTE: This post was shared by Tourettes Action on its Facebook page. It originally comes from the blog of guest blogger Adrian.

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For nearly three years I’ve written a blog about running and mental health, and in particularly the impact of exercise on mental health, and vice versa. I’ve gone from a non-runner seeing everyone else do it, to a seasoned marathon runner, who alas is still beaten by the unprepared drunk smoker.

I’ve raced alongside men and women of every height, shape, size and disability and have had every sense of ego beaten out of me. More importantly, I hope my blogs have opened up a discussion about mental health, which still leaves millions suffering in silence due to the stigma attached, and the lack of government support for what is a huge problem in the UK and globally.

Through running, sales and various other events online and offline, I’ve managed to raise around £5000 for Mind and it is without doubt the best thing I’ve done, except perhaps for inventing the Snickers bagel.

However, I feel the need to apologise. I’ve written in depth of my own story, usually trying to use humour to keep people reading, thinking and supporting the cause. I’ve admitted my own battles with depression which have taken over much of my life, and which I’m aware will always be there.

Sometimes it’s the only way I see my life ending, but then something comes along and gives you hope. It does always get better, we all hang on to that fact, but battling year after year can take its toll on anyone. All any of us can do is keep talking, listening, trying to understand and realising that whatever problem someone has, physical, mental or just a difficult time in life, we’re all here together.

So why am I apologising? Well, I’ve held back a lot in what I’ve wanted to write about. I don’t just suffer from depression although it’s been a huge part of my life. I find that easier to write about because it impacts more people and helps more people relate, Mind is big enough charity to make real positive change and needs our help. I wanted to fight stigma, and it remains slightly cool because Stephen Fry has it. I’m half joking.

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Yet I have Tourette Syndrome. I hate the words. The sound of them, the sight of them, even grammatically, is it Tourette’s Syndrome? I suggest so given it’s named after someone called Tourette. Why couldn’t he have been called Gilles de la Awesome. I’ve got awesome syndrome. Or as the public seem to know it, hilarious swearing disease.

The butt of many jokes in TV and films, always the same with someone swearing inappropriately at a person or quiet location. I’m yet to see a genuinely funny Tourette’s joke. Perhaps that’s my main problem with it. I’m more offended as a comedy fanboy than I am as a Tourette’s sufferer. I once mocked someone drunkenly walking into a lamppost and several seconds later twitched myself into the same lamppost and fell over. Tourettic retribution.

The public perception has meant many people would have no idea I have it, some might not believe me now, some haven’t in the past. Sometimes I’ll be controlling it very well, maybe for months, but it is very much still there. More of you will of course be thinking, yeah, we knew all that you twitchy freak. And I have no problem with that.

The swearing or foot-in-mouth nature of Tourette’s is so ingrained is society that even the ever unpopular David Cameron could get away with using Tourette’s as a joke about someone talking too much. This attracted a couple of news stories that promptly disappeared with some even warming to him more for the joke. Imagine how long the story would have run if he’d make a joke about more physical disability.

I’ve lost count of the number of comedians doing jokes about Tourette’s always with the same emphasis. Ricky Gervais caused controversy over the use of the word mong causing Scope to complain and other comedians such as Richard Herring to condemn him. Yet when Gervais found Tourette’s funny, there was no hint of a backlash. My main problem with his tweet about Tourette’s and laughing at THIS tshirt, is that unfortunately, some small part of me does find it mildly amusing.  But at no point have I denied being childish.

Somehow, there are two volumes of a book called ‘Pets with Tourette’s’, indicating the first collection of animal drawings swearing was sufficiently popular. I can’t claim to have read both books, so perhaps I am the ignorant one this time and it truly is the elegant prose you would expect from The Daily Sport’s ‘most hilarious book on the planet’. That should come as no surprise, given author Mark Leigh claims to have worked with luminaries including Rolf Harris AND Roy Chubby Brown.

If on the other hand you find this hilarious, you are a dick.

If on the other hand you find this hilarious, you are a dick.

Gervais once said racist jokes aren’t funny because they aren’t true, and he is absolutely correct. So why are Tourette’s jokes alright when they show nothing but ignorance? I’ve lost count of the number of references to Tourette’s in TV and film just using it as a by-word for saying something unfortunate or offensive. Even the sympathetic documentaries on the subject focus on coprolalia cases. Having worked for five years as a TV analyst, trust me, it’s ratings before education, research and equality. This also explains the quantity of time the BBC give Nigel Farage.

The act of involuntarily shouting words and swearing is known as coprolalia and around 10% of Tourette’s sufferers endure it. So, to all the comedians out there, 90% do not, including me. My biggest complaint is your inability to write vaguely original authentic well-researched comedy.  We can complicate it further by talking about echolalia, where you repeat words and noises of others, or indeed yourself. Copropraxia where you make involuntary obscene gestures, or the range of associated sleep disorders, anxiety, depressive conditions and mental health problems. Anyone wanting a more detailed picture of the illness and all its intricacies should visit http://www.tourettes-actionuk.org. All I can offer you is my own experience.

I recall it beginning around age 9 and making noises for no apparent reason. I wasn’t seeking attention as people assumed at the time, and why wouldn’t they? I was hyperactive, loud, struggled to focus and struggled to sleep. It could describe a lot of children without Tourette’s if we’re honest and I don’t believe we need to label everything.

The noises didn’t disappear but were overtaken by movements, primarily involving my neck and eyes, which didn’t go unnoticed at school. Again, while hurtful I think my main disappointment was the lack of originality in the insults. Look at the kid nodding all the time, ha, noddy. To the best of my knowledge, my school produced no comedians.

In many cases it does subside with age, but I can’t say that has been the case for me, although it has definitely changed and evolved. There have been times when I’ve been more settled, in particular relationships or homes that I’ve found it more manageable. That’s not to say the condition has diminished, just that my capacity for suppressing it and coping is markedly higher. This also works vice versa and at 33, single and without somewhere I would call home, it remains challenging. Form an orderly queue ladies.

It has been with me so long and interweaved into the fabric of so many days I could write a book on it, but I’d like to try and keep this to a length that a few people have a chance of actually reading.

As an adult, I have experienced ‘tics’ (another word I hate, let’s go with twitches) in every part of my body imaginable. You can be looking at me, talking to me, yet see nothing. Beneath the surface there may be toes, ankles, calves, stomach muscles, fingers, arms all fighting to move, or me fighting back to constrain it.

When successful, I find myself very low on energy, yet to ‘let it all out’ in my experience makes me feel far worse and exacerbates most the twitches. It’s not surprising such an experience can lead to severe depression, but that’s something I think might be there regardless, although it’s impossible to know for sure.

There are endless contradictions about what makes it better or worse. I have tried all sorts of diets, medications, therapies or just avoiding some situations which mixed results. Sometimes I can cope with crowds, cope with pressured situations and show no nerves with public speaking, interviews and so on. Other times I can’t walk down the street without going half blind.

Generally, I don’t like really crowded places, yet I live in London and worked for years by Oxford Street. Sometimes you just have to cope with it regardless. While I can be shy sometimes, overall having been stared at in the street and abused fairly regularly there’s not much that fazes me anymore. There’s nothing quite like accidentally making inappropriate facial gestures in London. It has very different consequences if its staring at angry drunk people on the tube, or the friendly folk of Old Compton Street.

Try not to blink for as long as possible. You will feel a strong urge that technically, you can control for some time. Now try it again while thinking about blinking, or reading the word ‘blink’ on the piece of paper. That urge will give you an insight into Tourette’s. Now imagine it’s not just blinking, but a dozen different urges, some contradictory, some more dominant and some just painful.

An interesting development of recent years has been certain twitches teaming up in coordinated attack. The eye movements will take place alongside neck movements, or throw in an arm twist or stomach clench that either gives me a hernia or makes people think I’m really enjoying the music in HMV.

The toughest side of this is the impact on my breathing. It’s something I and most of us take for granted. Yet breathing twitches, often combined with all other twitches can be completely consuming, sometimes leading to panic attacks. Just having to think about your breathing, the rate and depth of it makes it somewhat challenging to go about the tasks of the day or enjoy any moment. It’s as if your subconscious is demanding a more leading role and there’s nothing you can do about it.

Someone recently told me they noticed some of the twitching on the very first date. Yet it still turned out to be the best first date I’d ever had, so there is hope when I can control it to any extent, and of course, people such as her who wouldn’t let it stop them giving someone a chance anyway. Because it isn’t me. It has shaped me, affected me, but every person on the planet has experiences that will do that.

Perhaps I’ve become more of an observer, sitting back and thinking more, I’ve definitely been given more empathy with it and hate any form of discrimination. Yet I don’t judge people too harshly for mocking it, especially at school as I can’t say for sure I wouldn’t have been joining in had it been someone else. Although clearly I’d have come up with a better joke.

In case you hadn’t noticed, this blog has been about running, and mental health, but mainly running, and mental health. I started running for the physical and mental benefits as I’ve previously talked about. What I haven’t mentioned however, is the impact of Tourette’s on running, particularly in events.

I never wanted this to become some excuse about my finish times, I have no ego about that having run against every age, shape and size of person imaginable. I imagine running could help with the condition for some people. Walking often does for me, although somewhat ironically and unfairly, depression is the best cure of the twitching. I’m yet to decide which is the short straw.

When I run I suffer a lot of neck twitching, while my eyes are often screwed up making vision somewhat, well…impaired, leading to anxiety and the impact of breathing. That is a normal training run. It says a lot about my planning and foresight that only when faced with 38,000 people in front of my at the start of the London Marathon did I think ‘this could be a problem’.

Anyone would find it difficult having to navigate those crowds and it does impact your time, but for me it was a case of trying not to trip over anyone, trying not to send a sprawling arm into a face, the constant battle to keep my eyes open long enough to avoid collision. I would say in each event the Tourette’s has taken half my energy. I have no idea what that means in terms of my ability, and I don’t particularly care.

All that’s important to me is that I kept doing it, and always finished whatever hell I was in. During one training run I screwed my eyes up long enough to sprint into the back of a police van. Unfortunately due to popular culture, these days when you say ‘sorry I have Tourette’s’ it’s widely assumed you’re taking the piss.

While we’re on the theme of sports and me making a tit of myself: football. I read an interesting piece by Tim Howard in the Guardian today describing his experience with Tourette’s which is well worth reading. Although as I’ve said, it’s such an individual condition I have no idea what he really goes through compared to me.

That’s partly why this article by the BBC was a little annoying (does TS make him a better goalkeeper?) Well, no probably not. For a start, you’d need to study a huge number of Tourette’s suffering goalkeepers wouldn’t you. To the best of my knowledge, there is only one playing professional football. I find it far more likely that Tim Howard is actually just a ridiculously good goalkeeper, Tourette’s is just part of his story and what he’s dealt with.

Having spent a lot of time as a goalkeeper, I have great respect for him. I struggle with fast movement so the notion of sport improving concentration and reducing twitches certainly isn’t true in my case. Given that, it probably says something about me that I enjoy it anyway. Do I have better reactions because I’m used to so many sudden violent movements? I doubt it.

All I’ve found is impaired vision, anxiety and blind panic when I play with people I don’t know. This once culminated in having my eyes closed as a slow long shot rolled past my food. It still amuses me to recall the cries of ‘shoot, he’s rubbish’, rather than ‘shoot, he’s got Tourette’s!’

I would love to play more sport but quite simply the pace and movement makes it very difficult, my ability will never be what it could and I don’t like the idea of letting down teammates. That is partly why running appealed, just focusing on my own project, not letting anyone down, improving my times and being proud of what I could achieve. Whatever limits you, and it’s different for us all, there will always be something else you can turn your attention to and thrive.

I have found in the past that when I tell someone about it, my condition becomes worse around them. This isn’t their fault, it’s just an unfortunate aspect of the illness. For many other people thankfully they find sharing is a huge help, and today at age 33 I have reached a point where I no longer care what anyone thinks, and want to try and at least educate a few people on the condition. What it will mean for the future, we shall see.

Work has been a major source of struggle. Despite gaining a degree and masters I have found focus very difficult, both mentally and physically. I have a constant feeling of not having done quite as well as I should have, but who is to say I wouldn’t have that without Tourette’s and depression.

In the big world of employment I found sitting still performing unchallenging tasks repetitively to be the biggest obstacle. Sheer frustration met with cramped social anxiety have produced quite the twitchy cocktail…although at no point in my career have I been anywhere near the weirdest person in the office! Around the right people, performing work I care about, I have no doubts I would be fine and I’m not about to give up on my ambitions anytime soon.

An estimated 300,000 people in the UK suffer from Tourette’s, in its many forms. The emphasis of research looks towards children and behaviour at school, which I can understand. However, the assumption it alleviates with age can leave you feeling stranded and lone when it doesn’t.

Many doctors have little information or focus on the depression, anxiety or OCD, offering antidepressants. Antidepressants which can of course, increase anxiety and twitching. Awesome. There are support groups and forums of course, but again I’ve found them dominated by worried parents wanting more information.

Perhaps it’s such a diverse condition affecting so relatively few that there aren’t many to share stories with, but ultimately it doesn’t matter, because I can share my story with you. A story that basically boils down to one person’s perspective on life, and we all have one to share. Given the complexity of the condition I don’t have any black and white advice for parents, other than patience, not attributing everything to the condition and never doubting that there’s a real person with well-informed ideas in there. Well, sometimes, of course many of us can still be morons regardless of medical history. So it goes.

Too often I have been left feeling unwell, out of energy and having to cancel things, letting down my friends and probably losing a few along the way. I’m a constant contradiction having too much energy, not enough, being overconfident, then terrified and anxious. I can be everything, and yet all too often nothing. I suffer a lot of neck pain and wonder what the future holds both physically and mentally.

Yet every year whatever is thrown at me I feel more capable of dealing with it. These blogs have helped me understand the many aspects of depression and I hope increasing numbers of people are talking about it and seeking help. Now, although not such a severe problem across the UK, I hope we can reduce discrimination and at least spread a little education on another subject.

If you would like more information on Tourette’s Syndrome, how to get a diagnosis, support groups and treatments, please visit Tourettes Action or find them on Twitter @TourettesAction

There you go then, something to mull over with your…mulled wine. Merry Christmas and a very happy 2015 to everyone who has continued to read this and support the fundraising, and generally the work of Mind, Time to Change and Tourettes Action UK. You can donate to Tourette’s Action UK via the below link.

http://www.tourettes-action.org.uk/47-donate.html

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