Previously I’d assumed the world wouldn’t fall apart if I didn’t update my blog, but it’s getting a little close for comfort. Some day I hope to begin a blog without explaining why it’s taken so long to write another blog, but it at least has some relevance for this one.
The physical side of Tourette’s can go unnoticed at times. Recently I’ve been in situations where doctors and research professionals are analysing me and most of it is still not evident. Yet the hidden depths of the physical manifestations don’t come close to the associated mental health issues, which remain largely hidden to all. I started writing about mental health before I ever mentioned Tourette’s, partly because it’s something most people can relate to in some way. There’s an important distinction to be made, that while Tourette’s contains associated mental health issues, it is a neurological condition.
While many people I speak to or read about seem to share experiences of regular exhaustion, I don’t know how I compare. Perhaps I’m just incredibly lazy, I don’t know, as yet I’ve only been me. The associated exhaustion and insomnia is always going to have a detrimental impact on your mental health, while physical and mental facets of Tourette’s interact every day. Whether it’s tics coming out at the worst possible time, heightened anxiety or accidentally rolling your eyes sarcastically at the wrong person on the tube, it’s always there.
Overall I’m grateful for the perspective each of these experiences of mental health has given me. I’ve learned not to stress over insignificant things and factors I can’t control, while appreciating what really matters. It has also provided increased empathy with other people and a keen interest in psychology. In this blog I’ll explore some of the most common mental health issues associated with the condition.
This will be just as familiar to people without Tourette’s and a subject that could cover an entire blog series in its own right. Although considerable progress has been made, it still often receives misrepresented coverage in the media. Enhanced understanding of the condition and an increased willingness to talk about it seems to have been met with some resistance. While there might be some over diagnosis of mental health conditions, I’m not quite sure a lack of scientific and neurological understanding, a fear of asking for help and increased stigma was really the golden age of mental health some would have you believe.
Having Tourette’s can get you down sometimes, positivity can wane for anyone, even bringing about the guilt of not living up to your blog persona. That said, Tourette’s doesn’t even get me down as much as accidentally glancing a Daily Mail headline when I’m in a shop. Depression goes beyond that feeling of being down, often leaving you feeling nothing at all. People often ask why you’re depressed but the reality of the situation often lacks reason. Like most people I could cite reasons such as money or work for getting me down, but these are stress factors. When depression strikes, or a lack of distraction returns you to that underlying feeling, you struggle to care about those things.
That numbness does tend to alleviate the tics though, as whatever exacerbates them is likely to be absent or at least reduce at those times. It’s basically a twitchy detox for the body. There’s next to no anxiety simply because you care less, do less and ultimately see fewer people. It’s almost impossible to understand the cause and effect relationship here. Is the depression just an associated part of Tourette’s, a coping mechanism for my body, or does the Tourette’s just lead to periods of depression? All these possibilities are true in their own way. I would say that rather than a pleasant relief from the day-to-day twitchy grindstone, depression can actually be worse. Even when severe, especially when severe, the tics don’t stop you feeling alive.
For many, OCD will merely be the fact I’ve divided this blog up into neat sub-sections, rather than being a serious mental health issue. The misconception around OCD rivals that of Tourette’s and in five minutes on Twitter you’ll find the same jokes about each over and over again. Tourette’s is just used to mean any outburst, apparently even in written form which is a new one for me, while several thousand people each week feel the need to say they’re so OCD they call it CDO so it’s in alphabetical order. The only time this had any comedic value was the one person who made the joke but didn’t quite manage to actually put the three letters into the correct alphabetical order. It might seem harmless enough, but normalising ignorant terminology and trivialising serious problems can snowball into something far worse. There’s also a chance my entire motivation to achieve increased understanding of complex mental health issues is to drive more factually accurate comedy. I still consider it a worthy goal.
I have very minor OCD thankfully, although at its best it can still be quite distressing and waste a lot of time and energy. Many with Tourette’s have commented on things needing to feel ‘just right’. While I’m keen to avoid stereotypes, I have had the generic tidying aspect of OCD. Yet this isn’t just taking pride in your home, it’s a deeply unsettled feeling that rarely goes away. You find yourself picking pieces of fluff off the carpet at 3am or you won’t be able to sleep. Sometimes a room just never feels right, or you don’t have the energy to finish tidying or putting everything away. This exacerbates the unease and ultimately increases the twitching. For many years I’ve disliked my room being brightly lit, yet never really managed to explain why to people. I think lower lighting shuts off the OCD a little, I feel more at ease, there is less to focus on and you don’t notice imperfections and problems in the same way. This is a feeling I’ve lived with all my life, yet as I say, this is minor OCD.
Confidence is a massive help for dealing with Tourette’s. Borderline arrogance even, while not desirable, is certainly less twitchy. I end up more vain than I’d like in the quest to be comfortable and more confident. Too many days painfully uncomfortable in your own skin both physically and mentally make the effort vital. Perhaps it is merely inherent vanity, but too often anxiety and associated tics come from feeling uncomfortable, be it in the clothes I’m wearing that day or in my body generally. Anxiety can escalate so rapidly you find yourself in inescapable situations you know you could never rationally explain to people. Things that seem simple, avoidable and frankly ridiculous, yet the anxiety takes over and renders the situation impossible.
My newest anxiety is not appearing sufficiently twitchy in front of people who’ve read my blogs about Tourette’s. Obviously anxiety-based disorders are no longer deemed serious enough for consideration by some MPs, quickly undoing a lot of the progress made in reducing mental health stigma and discrimination in recent years. For too many, anxiety is just written off as a case of ‘feeling a bit nervous’, rather than something mentally and sometimes even physically crippling. It varies greatly from person to person whether you have Tourette’s or not, and for me it can be very difficult to know if anxiety is making me twitchy or if twitching is making me anxious. Explaining the feeling to someone, the raised heart rate, the internal conflict and inconsistencies of it are almost impossible, but I think most have experienced some degree of it whether they label it or not. So often it’s over small, seemingly insignificant things. I find myself more relaxed and confident about public speaking, dates or job interviews than I do walking around a new office without falling over.
Disorientation is fundamentally a physical experience but it’s all experienced internally and not much produces anxiety like being in a crowded area, struggling to see and suddenly feeling like you can’t keep your feet on the ground. You start to question very basic decisions, almost forgetting how to cross a road when it’s at its worst. I don’t often let it stop me going out, but it quite simply makes it less enjoyable and adds an extra layer of stress. So much so you find yourself forgetting how to navigate stairs in Café Nero and throwing coffee all over some bankers. I still maintain that was at least subconsciously a political statement.
When experiencing anxiety you want nothing more than time alone watching TV without any pressure or eyes on you. This anxiety doesn’t always even go away when asleep. The vivid unpleasant repetitive dreams you might have with a fever seem to come along too regularly, leaving you feeling exhausted from the moment you wake. Sometimes when trying to get to sleep, thoughts and images beyond your control come into your head and won’t stop beating you up. It’s often not the content that’s the problem but the speed of thought. You can’t slow it down enough to grab hold of anything discernible; it’s literally in fast forward, often just rapidly flashing images, or thousands of faces flying by. Although, it’s possible that may have partly been over-exposure to Tinder.
Focus can also be a catalyst for physical tics. When I’m in a rush, perhaps getting ready to go out, any attempt to look in a mirror, brush my teeth or put clothes on will descend into a twitchy battle with gravity. I’ve found a lack of focus to be one of the most frustrating elements of Tourette’s, whether directly through the condition or due to the exhaustion associated with it, my mind wanders off, or just shuts down when I try to actually get things done. Deadlines help, I always get there in the end but it’s more of a mental fight than I’d like and often ends up in university style all-nighters. When it comes to writing and creative tasks, my mind goes blank when I actively try to be productive, yet I struggle to give up. Rather than through some sense of determination, this is purely because when I ignore these projects I end up writing in my head when I’m trying to sleep, or in the shower, or on the bus. Often fully formed sentences, stories or blogs come into my head despite producing next to nothing when I’ve sat for hours staring at the screen.
Even with enjoyable activities and passions such as reading, my attention wanders. More than that, my eyes actively twitch away from the page, even if I’m finding it fascinating. I’ve seen several articles and programmes about people with Tourette’s not having any tics or seeing a reduction when they’re playing music, or taking part in sport. The notion seems to be that attention and focus reduce the impact of Tourette’s. I have the opposite experience, which is doubly frustrating in limiting my attempts to come across as a troubled genius. I stopped playing football because it became too draining being that twitchy and I couldn’t keep up with the pace of the game. Disorientation took over, which gives you the passing ability of…well, an England midfielder. With music I’ve found my fingers and hands twitch more when trying to learn the guitar, and if I ever play in front of someone I find it very hard to focus. That said, when alone playing can be cathartic. That’s right; when I’m completely alone and no one can hear me I’m brilliant.
The current climate globally isn’t exactly geared up to sensitivity, empathy and listening to others’ problems; particularly those that can’t be seen. I wouldn’t want to discriminate though so let’s just say these are exciting times for idiots. There seems to be suspicion around mental health issues, a belief that people are trying to get away with something. It doesn’t seem to matter that focusing on the negative examples makes life far more difficult for the 99% who actually need help. We live in an age where binary thinking is encouraged across most media and is almost the exclusive means of argument on Twitter. Yet mental health exists in shades of grey. We also live in an age where we can no longer type shades of grey without cringing.
Even through more positive messages there is a risk of romanticising mental health issues, or making people feel they should inspire and be positive all the time. Ultimately, sometimes it’s just incredibly difficult. Imagine trying to explain the impact of Tourette’s physically and mentally while sat there seemingly fine, having recently run a marathon. Even people I know with open minds struggle to understand that one. It really depends on your perception as to whether it’s ‘you ran a marathon so it can’t be that bad’ or ‘running a marathon must have been even harder with that’.
Yet my experience has led me to engage with many thoughtful, interesting and varied people. There is a long way to go in fighting the stigma around these conditions but progress continues to be made. The worst thing anyone can do is silence you because of your condition, be it Tourette’s or a mental health issue. It’s fine to disagree with opinion, but when someone suggests your views are dictated by your illness, there is really nothing more to say. My personality and opinions are a product of a million different situations, interactions…and about seven podcasts. Like anyone else with long-term health problems, it has an influence, but no more than many other factors. We can all gain by being open-minded about these conditions, encouraging conversation and ultimately, engaging with interesting people with a story to tell.
7 thoughts on “All In Your Head”
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As a man living with TS, I found this piece particularly relevant. Most of what you describe I can relate to. The depression, insomnia and writing War and Peace in your head whilst trying to sleep all struck a chord. However, I have a professional qualification and work full time. Colleagues are unaware of my “condition” as I prefer not to have the jokes about swearing made ( I only swear occasionally). I also perform, on guitar and vocals, in public; without the fear of ticcing. The associated exhaustion is a double edged sword, as I find it as exhausting to tic as to control them whilst working. A very informative blog. I feel less alone. Thank you sir. Keep up the writing.
Thanks very much. I’ve managed to sing (badly) in public, but my guitar playing goes badly wrong when I play in front of anyone. My mind jut goes blank, I try hard not to twitch and just forget how to play. But still love playing anyway.
Great article! You have exactly put my struggles with TS down in words … feelings and behavior that I never thought were related to having TS. I really struggle with staying focused too … and my mind wanders very quickly … and thoughts seem to fast forward at a thousand miles per hour. Whenever this happens and feelings of frustration surface, I tell myself to be kind and understanding to myself just as I try to do the same with others. I am really into mindfulness (15 min. of Headspace app is great first thing in the morning!), meditation, and yoga. It really helps me to be more in control of my emotions and how I react to all the struggles that are associated with TS. Thanks for writing this blog post. Hope to read more.
Thanks, glad you liked it. Ha, I use the headspace app too! Does help, only been doing it a couple of months but always worth trying new things.
Amazing you have just made me smile…. you have just described my son!! People find Tourette’s so difficult to comprehend especially as with extreme concentration he can be so, what is perceived to be stereotypically “normal” everyone should read this…..fantastic, made me feel quite emotional! Thank you!!
Thank you very much for this. I’ve found that though I can concentrate to do fine motor tasks etc, I end up with a lot of vocal tics at that time. I suppose it’s helpful that I only have motor and vocal tics together when under the highest of stress!