Thank you for all the questions you’ve asked across social media, the blogs and those from friends. Many of the topics raised will be covered in more depth in future blogs but here is a selection of answers to your questions.
What’s the best thing about having Tourette’s?
Increased empathy with other people, whatever their circumstances. It’s a helpful reminder that anything might be going on beneath the surface, whether health related or otherwise. Through my experience, writing, fundraising and running for charities I’ve spoken to a lot of great and varied people and I may not have had that experience without this condition.
When did you first recognise that these ‘things’ might be Tourette’s?
It wasn’t a well known condition at all and I had years of living with it before knowing what it was called. We didn’t have a computer at that point and there was barely an Internet to check these things on anyway, so my first experience was looking through a health encyclopaedia and stumbling across this condition that seemed to describe many of my symptoms. I was probably around 13 at that stage, although didn’t get diagnosed until I was 16.
Is it better or worse when people around you know?
I think it depends on the person. Overall, it has been physically worse with people knowing, although hopefully I’ve been able to do some good in increasing awareness. Talking about it more or completely ignoring it doesn’t necessarily make it better or worse physically, I just know the severity of the condition has increased a lot in the last couple of years. There are very few people I’m really bad around, simply because hardly anyone sees me regularly enough to witness it at its worst. If you see someone every few weeks, it will happen when you feel up to it, when you can suppress it more. There is some frustration that because of this, even those who ask many questions and take an interest still can’t really understand what you’re experiencing. I have many intense tics that happen hundreds of times each hour and can be very uncomfortable, but to most people they would go unnoticed.
Around strangers it depends on the situation. I will try even harder to suppress it and interactions are usually fine. There’s an element of being able to shut it out more around people that don’t know, or even enjoying the fact they don’t know. That said, when walking down the street alone I find it very hard to suppress anything and get a lot of looks from people. I’m also pretty bad while alone at home these days, with endless noises and movements when I’m trying to work or move around the flat.
Can I laugh at you? What humour is OK? Where’s the line?
It’s all about context, there’s no point trying to draw arbitrary lines. I try to laugh about it, I don’t mind people I know laughing at it, even doing impressions of me. At least they’re basing it on something real and merely trying to make light of it. The stereotypical Tourette’s = swearing joke is quite draining partly because it’s simply not true, but mainly because it’s such a tired joke. On any subject, repeating a clichéd stereotype joke doesn’t go down very well…and that’s more as a comedy fan than a Tourette’s sufferer. On social media many defend their tedious Tourette’s ‘joke’ by projecting offence on to you. It’s easier to assume everyone else is offended rather than consider you’re not very funny or original. I’m not sure any jokes would actually offend me, I’d just prefer if they were vaguely original or based on reality. In a world where I can repeatedly twitch my mouth away from a bagel I want to eat it, headbutt a lamppost or fall in a canal it seems a shame to just to focus on the swearing joke.
When would you be doing it and I didn’t know?
The vast majority of the time. I’ll either be successfully suppressing it, or it just might not be clearly visible to everyone. Some tics will be, but even then it depends who happens to be looking at that moment. Recently I find even successfully suppressing it takes me away from the situation a little, I’m focused internally and my body is uncomfortable so it can be hard to enjoy social situations as much as I have previously. In bigger crowds this often translates to being quiet, detached, in a bit of a daze and feeling a little frustrated. In terms of tics you wouldn’t notice, there are dozens of movements in my neck, hands, arms, neck, side, legs, feet and toes happening all the time that can be quite subtle, more intense stretch-like movements that jerky tics. I’ll also be pulling at my clothes and readjusting them all the time on the days I really don’t feel comfortable in my body. Even people who know about the Tourette’s and see some evidence of it still don’t see about 90% of it. The few people who have seen it at its worst still don’t see the majority of it.
What embarrasses you the most? Do you think that it bothers other people?
I don’t think I’m often embarrassed by it anymore as I’ve had people look at me on the street for over 25 years. It’s more a feeling of frustration or exhaustion. I can’t say I like it when people notice and stare at you, some laugh, some mock but when it’s bad my mind is focused more internally on trying to cope with it so I probably miss a lot of people’s reactions. I do feel guilty sometimes if I’m twitching a lot or making noises in public, particularly in cinemas, gigs or football matches. I don’t enjoy football matches so much anymore because I get particularly bad and am aware it might bother people. It might bother me if it were the other way around but I probably worry too much.
Do you feel part of a community? Do you feel the need to connect to others with Tourette’s?
I have had a lot of feedback following the blogs and magazine articles in recent years and spoken to many people with the condition, or those close to other sufferers. There are many shared experiences and many differences but it is helpful to feel someone understands and that you aren’t entirely alone. I am always happy to get more involved, to increase awareness and to interact with more people although I have limited experience face to face with other Tourette’s sufferers. To be honest I imagine being around others would set my tics off quite a lot, or if it didn’t I’d feel like a fraud if I was having a day of successfully suppressing it all.
Can it make you feel isolated?
Definitely. Even after writing about it for some time now there is often a feeling of struggling to make people understand, that they’ll see you and think it’s all fine, that you’ve exaggerated it. It’s a delicate balance as I don’t want sympathy and am delighted if I can seem fine and get on with life, but increasing people’s understanding of neurological and mental health issues is vital. It has been an isolating condition for many years in the sense of needing time out by myself, often indoors resting, recovering so I can function day to day. Sometimes people seem jealous of this time, thinking it must be wonderful to have so much time out, with all the things you could do. It’s frustrating because in most of that time I don’t feel well enough to enjoy much or focus on anything so I often feel like I’m missing out. All it really means is I’ve seen more TV than most, listened to a lot of podcasts and read quite a few books!
Is it linked to other illnesses?
There are many associated conditions such as OCD, depression, anxiety, ADHD or eating disorders and I’ve experienced all of them to some degree. Tourette’s can take its toll and bring on mental health issues but ultimately it’s a neurological condition rather than a byproduct of any other illness.
How can we best support you as a friend?
Cash is always helpful, but I appreciate anyone making an effort to understand. If you read my blogs then that’s enough, but feel free to ask anything or comment on it in person. Helping to limit the misconception around it helps too, if you see or hear people using Tourette’s in the usual way to mean swearing, explain what it really is. The more people that fight misconception the better, and that’s not just limited to Tourette’s.
When do you feel most at ease?
Recently the closest I get to at ease is probably alone at home with nothing I need to be doing. Sadly, that’s not what I’d choose as I prefer to be busy, out and around people. In the past I’ve been far more at ease being out in crowds or social situations so I hope it can return to that. Some people put me more at ease than others, I imagine that’s true for everyone. I imagine many people think I prefer being alone and avoiding social situations because I’ve done that so much, but what’s best for my health short term and what I want to do are often in direct competition.
Is it better when you’re concentrating on something like music or writing?
I’ve seen several articles and programmes about people with Tourette’s and several other conditions finding symptoms reduce or disappear when focusing on creative outlets, or even engaged with work or sport. I have never experienced that, with the tics coming out more when I’m keen to focus, whether it’s something I really enjoy doing or not. It seems to be exacerbated if there’s someone watching or time pressure too.
Does it impact computer games?
The fast moving nature of games does exacerbate symptoms for me. Games don’t make me worse overall though, I will be bad during the game, feel exhausted afterwards, then quickly return to normal. So it’s worth doing if you enjoy it and I still play fairly often. I’m definitely nowhere near as good as I could be as my eyes can’t keep up and tics keep them closing every few seconds, or my hands twitch off the buttons. So shame on you if you’ve lost to me at FIFA…not mentioning any names.
Do you apply for jobs as ‘disabled’? Does this guarantee you an interview?
This is a tricky area. I have applied for many jobs without mentioning it and many with full disclosure and explaining the disability. Technically it can guarantee you an interview ‘if you fulfil the minimum desired criteria’ but that remains an extremely subjective measure. I find if I don’t explain my condition and the impact it has had, my career history doesn’t make as much sense. Yet when I do explain it, I feel my chances of finding the right job are diminished. It’s frustrating as I’ve performed well in the jobs I have secured in the past, but I haven’t had a permanent position since I began writing about Tourette’s. I’m lucky to have the pieces of contract work I do but I miss working with people in an office and the opportunities to develop. I don’t think it would hold me back at work once I was settled in and comfortable somewhere. In terms of work content I haven’t felt challenged since university really, besides the sheer volume of workloads. I would like to think I still have a lot to offer.
Does it impact your ability with physical exercise? Does it help control the tics?
I find exercise helps control the tics in the sense that the fitter you are, the more you can fight it. The Tourette’s may get worse anyway but you’ll be better placed to deal with it when feeling otherwise fit and strong. That said, I’ve always found the tics come out far more during exercise. It stopped me playing football because I just wasn’t enjoying it anymore, the pace of the games felt too fast and my eyes wouldn’t stop closing. Running has been helpful and I’ve managed to complete events I never thought possible, but I can’t pretend I wouldn’t have been faster but for the several thousand tics per marathon!
At what stage of dating do you feel the need to declare it?
For many years I didn’t but it wasn’t so much of an issue. I could suppress it a lot more and I was just used to no one knowing and felt more comfortable living that way. I would explain it over time if it seemed appropriate but it wasn’t really on my mind when I started dating people. That changed once there were so many blogs and articles out there about me and the condition, especially given how stalky everyone gets on Tinder! A few people asked about it after a couple of dates because they’d found things, sometimes it came up naturally and ultimately in the crowded online dating marketplace it actually ended up making me more interesting! I imagine it could put plenty of people off if they found out before meeting me but once we’d spent some time together and they hadn’t noticed anything I usually felt more comfortable with them knowing. It’s a delicate balance as I wouldn’t want to pretend I was fine and healthy all the time but equally no one goes into all their problems on a first date do they? Well not if they want a second date anyway.
What’s the scale of impact? Is verbal worse than physical?
It’s very difficult to say how it compares to other people with the condition, it seems different in each case in terms of the type of tics, the severity, frequency, combinations and ability to suppress it. I wouldn’t want to get competitive about my Tourette’s! I suppose because I was able to suppress it for so long some would assume mine is mild, but the few people who have seen me at my worst know that’s far from true. I find the physical tics far worse due to the severity of the movements, even when subtle they are quite intense and repetitive. I have had very limited verbal tics as an adult, although these have returned in the last couple of years.
Does it hurt?
Yes. The sheer volume of tics with thousands of the same movements each day does lead to a lot of repetitive strain and I get a lot of aches and pains in my neck, back and hands in particular. The intensity and violence of some movements can be painful, especially in my stomach where I can feel quite sick, and the head movements bring about a lot of headaches. I’ve also managed to punch myself in the face a few times too so there’s always new ways to injure yourself with Tourette’s!
What’s the worst twitch?
I’m sure the answer to this question has changed many times over the years. In the last few months it’s an intense muscle movement in my left side that causes extreme abdominal pain and nearly gave me a hernia…although it seemingly also builds core muscles so there are some benefits. It’s not even always obvious to observers, I may appear to be just shifting in my chair or squirming a little. However, it happens a lot when walking down the street and no doubt looks quite odd regularly bending over to the left and wincing. Before that the worst tic was a rapid and violent movement of my head to the right over and over again for 10-20 seconds. That caused a lot of neck pain and dizziness. I’m yet to find any answers as to why twitches aren’t symmetrical, but that one would only ever be the right hand side and the stomach tic is always on the left.
How is it treated?
There are several medications on offer but they aren’t produced specifically for Tourette’s and there’s a lot of trial and error as to whether it has any benefit. Personally I’ve only found mediation to make things a lot worse and had a particularly bad experience the last time I tried it. I think counselling and CBT can be more effective and both have helped me, although these are more coping mechanisms than cures.
Does it get better with age?
I have seen a lot of research saying it does, I was told by a specialist a long time ago it would, but it has gone the other way. There was improvement in my early 20s, then it was quite consistent until my 30s but in recent years it has been severely downhill. What was previously a really bad day is now the average and overall it takes a far heavier toll. That’s not to say younger people shouldn’t be optimistic, I’m sure it is different in every case and depends a lot on lifestyle, stability and no doubt a slice of luck. I think stability and focusing on things that make you happy are vital. If you stop pushing yourself and avoid situations then they can become increasingly difficult. I remain hopeful that this bad spell will be temporary and I’ll have many better years to come.