I Swear It Isn't True

Posted Tue 25th Mar 2025 at 14:31
by Adrian Reynolds

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Tales from the world of Tourette's…….by Adrian Reynolds

Current tics

Recently during a live interview, I was asked “so what tics you got?” The question alone highlights the lack of understanding of just how complex, varied and severe Tourette’s can be. Another guy with Tourette’s had coughed a few times and the host pointed that out before enquiring what my tic was. I paused for what seemed like too long when on air, debating going into detail before saying “oh too many to mention”. So I thought I’d now actually answer it and cover what tics I have right now, how they combine, and their impact. Then imagine me trying to cover it in a one line reply on the radio. 

Firstly, Tourette’s has continued to worsen the last year or so. Besides a high frequency of tics the toughest part is there’s nearly always complicated combinations. I’ve struggled to hold in the vocal tics, ranging from persistent throat clearing and coughing, to very loud bizarre sounds. These are never words, funny phrases or swearing, because I’m only funny on purpose. This has severely limited my Tourette’s fame. 

Besides the physical discomfort of the vocal tics, the most difficult part is the reaction. Nearly everyday people walking in front of me look round, thinking I’m making noise so they’ll get out the way. It’s a constant anxiety of impolite vocal tics. This is my version of involuntarily shouting racist obscenities. Just unbearable British awkwardness. It often gets worse in crowds, so I’m often found freaking out strangers on tube platforms and London trains. 

If that doesn’t sound fun enough, now add in the combinations. I rarely ever make these noises without other tics joining the party. Most often this is eye movements, either closing them, stretching them open, neck movements that can be violent, bending and contorting my back or stomach, sometimes kicking or my arms flailing around. Yet at no point have I accidentally given a Nazi salute on stage…or anywhere else. 

I’d gotten away with seeming relatively normal when out and about for many years. There’d always be some difficult days and embarrassing moments, but on the whole I could head out assuming I’d be alright. That really shifted towards knowing I’d be getting noticed. It’s like being a Z list celebrity, with people staring slightly bemused. I think I’m well past embarrassment by this age, and it just becomes exhaustion, or guilt that I’m freaking people out or making them jump when I walk up behind beeping like a lorry reversing. 

Eye movements accompany every tic combination, they’re really the driving force of the band. There’s a constant tension behind them, and the tics are so frequent that I can’t really remember what it’s like any other way. It can lead to many visual issues, and led me to stop driving and cycling some time ago. I still end up walking with my eyes closed sometimes and seemingly unable to stop however much my anxiety rises. This had produced several awkward moments of walking into people seemingly very deliberately. 

Alongside the eye movements and noises, neck tics are usually thrown into the mix. It can be a slight lean or stretch, and can be a violent throwing of my head to the right over and over. That’s the most painful tic and the one to cause the most long-term damage. I’ve briefly blacked out from it several times, and once lost feeling in my right arm for a few hours. Not to mention the times I’ve whacked my head on walls and doors from it. When you’re already in pain, Tourette’s likes to troll you and make tics like that even worse. 

The severe neck movements became so frequent that it really affected my ability to wear headphones. Over-ear headphones are out. Just feeling them on my head just increased the tics tenfold when I was outside. Recently, in-ear headphones have had their issues too. Several weeks ago, walking down the street near home, a neck tic sent one earphone flying directly into a skip. So I find myself climbing into (fuller than I’d have liked) skip to search for what is a very small device. It’s not always just outside either. I’ve found that when I get home, neck tics ramp up a level, largely due to having held it all in as much as possible throughout the day. So the headphones go flying again as I’m unpacking things or making food. I really should have learned to just take them out when I get to the door by now.

So we’re closing our eyes, making noises, throwing our head around…why not add in slamming your teeth together? That has been a very common tic the last year. Hundreds of times a day, sometimes just an incessant tapping of your teeth together making people wonder what the noise is. Other times a more obvious and dramatic teeth slamming. Besides causing a lot of headaches, this obviously leads to a lot of dental issues and intense toothache. 

Many smaller tics like to join in at times. My hand tics may not be so noticeable, but there’s constant clenching and stretching. This sometimes goes all the way up my arms and back. These can be some of the most frustrating tics, as you don’t know how to complete them. There’ll be a strong urge, a tension, like a severe itch you can’t scratch. You contort yourself and try anything you can to satisfy the need. Even if it’s painful, you still need to do it and feel relieved when it’s successful. It’s distorted my relationship with pain a lot, often confusing it for relief. 

When it comes to regular stretching for flexibility or to ease pain, I ended up doing the opposite of what would help. It took me many years to understand this. You have a slight pain or discomfort, you stretch and feel that it’s satisfying something. Yet I was stretching in ways that exacerbated the pain. It’s as if the pain itself became a tic, and I need to feel it more. 

Despite all that, the most debilitating tics for me are the ones I can’t actually do. That urge remains and grows, becoming a painful frustration, like you’ve forgotten how to blink for hours. Breathing tics are amongst the worst, with breathing itself becoming a conscious act. There’s a tic requiring incredibly deep breath or exhaling to produce a feeling deep inside your chest. A feeling that is either unreachable or takes a huge effort. It can be a panicky feeling and consume everything while it’s happening. It definitely makes meditation tricky when you’re constantly reminded to “focus on your breath.” All too often, it’s best I don’t. I even had to stop listening to an audiobook about breathing due to it’s impact on breathing tics.

At its worst, the combination and intensity of tics can be near seizure like, or a “tic attack”. I sometimes get a similar feeling, but without such a range of tics. The tension builds up and I can feel it about to come out, often as an overwhelming urge to jerk my hands or arm and throw something, or hit myself. Many devices have been broken in these moments, and dinners ruined.

I’m sure there are many tics I haven’t covered. The weirdest ones aren’t movements or vocal, but getting “stuck”. You move your hand, it just stops. Even if just for a few seconds, there’s a strong feeling of being unable to produce smooth intentional movements. Whether styling hair or brushing teeth, my hands just decide to buffer before they get there. 

There’s no doubt writing in detail about tics can sometimes increase them. However, these are all very common and severe at the moment anyway. New tics come along, existing ones evolve, and old tics make a nostalgic return. So while rarely boring, it’s never going to be something I can explain in a single sentence when interviewed. Tourette’s doesn’t just impact people in different ways, but its form and intensity vary over time and situation. Ultimately, increasing understanding of that complexity is the purpose of writing about it. As with many other neurodiversities, there’s still a real need to shed light on the real experience and variation of Tourette’s.

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