It can be so difficult to describe pain in any condition. The severity, location, type of pain, whether it’s constant or changeable. It can be frustrating when you talk to a doctor on a day when you’re feeling better, or trying to explain to friends that if it wasn’t hurting so much today, you wouldn’t be sat in front of them. Tourette’s has given me insight into a huge variety of pain in most areas of my body at some stage, and that’s before considering the mental impact. Overall I can’t say I’m in agony each day so I am probably one of the luckier ones. It’s more of a state of long-term discomfort. I even have some more peaceful days where even that disappears and I relish that time.
The tics have been more regular and intense in recent months. This is mostly a lower ability to suppress them due to instability in life, stress and lack of sleep. The most recent painful tics are typical in that you would barely notice them if I was standing right in front of you. They tend to be intense stretches, particularly in my arms where a small movement can be agony due to the force placed on the muscle and joint. I feel a popping between the muscles in my shoulder and the more painful it gets, the harder it becomes to avoid doing it again. That is often the way with a muscle strain or injury with Tourette’s. You know that tic will hurt even more, you know it will mean it takes longer to recover, yet it just makes it more difficult to fight the urge. The severity of the arm tics not only cause a sharp pain in the moment, but longer term intense aching in my hands and wrists from the nerve damage. That discomfort can feel hard to escape.
Repetitive strain and the impact of these stretching tics has caused pain in my legs, knees, hands and neck for many years. Particularly in the cold weather, these joints can ache and usually feel extremely uncomfortable. Then there are the more noticeable tics, some of which disappear for days or weeks and at other times prove relentless. Kicking when I walk or run has been a problem and caused several knee injuries, not to mention the awkwardness of accidentally tripping up someone walking down the street in front of you. I have taken part in running events where that kicking tic has happened hundreds of times and taken up huge reserves of energy, or even thrown me off balance completely.
My neck often bears the brunt of pain due to the frequency and vigorous nature of the tics, often leaving it feeling and sounding like a bag tightly packed with broken glass. The violent tic of throwing my head to one side as hard and fast as I can is particularly agonising. It’s nearly always to the right and I’m yet to find any reason for that, but the result is a lot of discomfort. Those tics can happen 10-20 times in quick succession, with such force you feel sick and dizzy. It’s almost impossible to speak during those times even if you can process what someone is saying. When combined with other tics it becomes seizure-like and feels incredibly draining. Only a couple of people have ever seen me experience tics that severe and I’m aware how upsetting it can be to witness. However, having someone there who cares makes the world of difference. It comes out more when I’m alone and there’s no shortage of times I’ve smacked my head on a wall or cupboard while doing it. Although the worst injury in that sense has been punching myself. That is quite rare, but I did recently give myself a lump on the side of my head by repeatedly hitting it. Sometimes I’m aware it’s about to happen, or the impulse is there and my hand floats around my head taunting me. Only once did I actually knock myself down from a punch. As spectacular as it looked, it gave me second thoughts about going to the gym so much.
More complex tics bring new types of pain entirely. I often have tics involving twisting my stomach muscles, stretching my back and usually holding my breathe or breathing in deeply at the same time. This can make you feel quite sick, nearly give yourself a hernia or as happened recently, injure your back and be unable to get up. Yet, the main problem with these complex tics is not being able to do them. Trying and failing to achieve the desired result can put you in more discomfort than any of the physical pain associated. Sometimes you won’t even know what the desired result or sensation is, but you know damn well when you’ve failed to get there.
Pain is not limited to muscular problems and sudden injury. I have spoken to several people with Tourette’s who experience stomach pains. Some of this will be linked to anxiety, with the physical ramifications of associated mental health issues often severe. Then there are the pains people would never think of, such as tooth and jaw ache from mouth tics or grinding your teeth. For me, one of the most regular and debilitating pains is the headaches and migraines Tourette’s can cause. This may be through the strain of eye tics, the jolting around of my head, or simply the exhaustion of managing it day to day. The outcome is an intense and inescapable pain that makes it impossible to focus on anything.
Despite these various physical pains throughout my body, I feel I am alright most days. I have learned to cope with most of it over many years and still feel grateful that I am able to control the tics to the degree I do. I have been working with the Tourette’s community and seeing evidence of people who have it far worse than me, some often unable to walk and in agony every single day. Even away from Tourette’s I see people living in far more pain than I experience who deal with it bravely and inspire me every day. For me, the mental side of the condition has been worse. Successfully suppressing tics through many days can make it easier to manage, but it is also more isolating with fewer people able to comprehend what you’re going through. Sometimes people say just let the tics out, no one will mind. It’s not through embarrassment that I hold it in, it’s just trying to minimise the discomfort and avoiding it snowballing. For me, it has been so long I don’t even know how I would just let the tics out now. They come out when they come out. I do my best to manage it, but like Mike Pence at Pride, we all only have so much will power.
The range of pain and discomfort caused by Tourette’s is so varied that managing it would benefit from seeing physiotherapists more experienced with the condition. Preventative care is needed to help people avoid injuries as well as working on existing problems. Massage can be a great help even if it’s merely a short-term release from the discomfort, but it can prove very expensive. The more pain you experience in your day to day life, the more beneficial such therapies can be. Unfortunately, the waiting list to see a physiotherapist can be very long. Like many people I end up turning to painkillers and heat patches to get by some days but it’s not a permanent solution and can pose further health risks. I’m open minded about treatments if there is any evidence at all that it can help and I’ve tried quite a few with mixed results. After some research I was under the impression that chiropractic treatment was mostly nonsense, yet after several sessions it became clear it was in fact entirely nonsense. More funding for physiotherapists would be a better solution.
Many people just don’t associate Tourette’s with pain, merely seeing a few tics or media portrayal of swearing. Even with more empathetic people the focus is on how awkward or embarrassing such tics must be. Having people take the time to listen and understand can make a huge difference in dealing with the pain. This may be a partner, friends and family or a professional counsellor. I have found regular appointments with neurologists to be helpful just in terms of talking, without the need for any medication. I was lucky to find a good counsellor many years ago and even luckier to be able to afford to keep going. As waiting lists grow for such services on the NHS, more people are going to go without the help they desperately need. Above all, a stable, relaxing and happy home environment is key in dealing with the physical and mental pain arising through Tourette’s. That and the most comfortable bed you can find.