I have one of the worst cases of Tourette’s in the UK. Blurting out swear words is the least of my problems

The neurological condition forced me to live with horrible levels of pain and caution.

Ryan Stevens | As-told-to Alina Jaffer

Two years ago, I sat shotgun on a long car drive with my partner, sporting a grisly black eye. It’s a familiar sight. My right eye is perpetually surrounded by tender swelling and purple bruises. Neighbours usually assume that I’m a fighter, or that my partner hits me. (He occasionally will play into the idea and tell strangers, “I did that last night. Ryan just wouldn’t shut up.” It’s dark, but making light of my issues is how we cope.)

So, we made our way down the road business as usual, until I realised that I couldn’t see my partner in the driver’s seat. There wasn’t a dark spot when I glanced sideways, just emptiness. 

Doctors and optometrists told me that I had detached my retina after years of smacking myself in the face – an involuntary movement, or tic, that comes with having one of the most severe cases of Tourette’s syndrome in the UK. The neurological condition involves muscular and vocal tics that are hard to control, frequently causing intense jolts and unintentional outbursts.

Eventually, surgeons placed a buckle behind my eye to hold the pieces together, but my peripheral vision is lost forever. They asked why I waited so long to schedule the operation, why I didn’t come in until my eyesight was seriously damaged. I guess I’m a typical bloke – I thought that if I ignored the problem, it would go away. Plus, I’ve spent most of my life in and out of hospital, so warning signs like blurriness seemed trivial. 

I’ve had other injuries before, of course. My physical tics started when I was 14 – usually scrunching my nose, jerking my head or tensing my toes. At first, doctors couldn’t explain what was causing this full body workout, their theories ranging from Pluto seizures to alien hand syndrome. For years, my dad drove me to and from medical appointments while my mum struggled to accept that I was ill. She naturally did not want her baby boy to be unwell. 

Some mothers don’t let their children play high-contact sports, wanting to protect their little ones from any physical trauma. My mum didn’t have a choice. I once cracked multiple ribs due to muscle tension. The doctor who performed my X-ray said the damage to my bones was equivalent to injuries seen in professional rugby players. 

Eventually, mum came to terms with my condition, and I received a formal diagnosis – big, complex, abnormal Tourette’s syndrome – at 21-years-old. Around this time, I also developed verbal tics, regularly blurting out “dickhead” or “wanker” at the worst possible moment. 

People think that everyone with Tourette’s syndrome swears uncontrollably, but that’s not true. I want others to have their facts straight, so I share parts of my life on social media. I tell the audience that, just the other day, I walked between a courthouse and a police station, saw two officers and accidentally called them both paedophiles. I also explain that only 15 per cent of people with Tourette’s have coprolalia – the tic that causes profane, socially unacceptable shouting.

In some ways, my goal to educate the public is working. The cops I cussed out weren’t mad because they recognised me from Instagram and television appearances. But despite efforts by myself and others, misinformation runs rife. 

After the 2026 BAFTA Awards, many suggested that campaigner and filmmaker John Davidson could have restrained himself from shouting slurs during the ceremony. He couldn’t. The impulse to tic is like a sneeze – the more you suppress it, the more pressure builds up and a release is ultimately necessary. Instead of the pressure tickling your sinuses, it travels across your entire body, like hundreds of ants crawling and twisting up the spine, utterly unignorable.

Intense emotions and pain make that impulse way stronger. I can’t get too stressed, too happy or too sad without inviting even more tics into the moment. 

During my nan’s funeral, for example, I didn’t grieve properly. I distracted myself during the service by pinching my hand. I knew that when the sadness flooded in, I’d become very ‘ticcy’ and disrupt the sombre occasion. I eventually broke down and ran outside, crying for 10 or 15 minutes in an awful mess. 

On less eventful days, mood-stabilizing pills – central nervous system depressants and dopamine blockers – keep my big feelings at bay. It’s monotonous, but I sacrifice feeling life to its fullest to have less physical pain. Balance is key. 

Lorazepam and Zopiclone, prescription medications that help me sleep, serve a similar purpose. Without them, tics keep me from drifting off at night, even if I’ve had an exhausting day. Unfortunately, the pills work so well that I need six alarms to wake up and usually stay groggy for a few hours. I don’t drink, but it’s like having a hangover every day.

From the moment I wake up to the second I fall asleep, Tourette’s affects my lifestyle choices. It has cost me my eyesight, my ribs and my emotions. It’s transformed everyday tasks into dangerous ones. I cannot use a knife when preparing dinner, in case I tic and stab myself. I can only use pinned weights at the gym, in case I tic and drop a dumbbell on someone’s toe. 

I can live with this reality. But I cannot accept when others glamourise the disease, especially on social media. There are two equally bizarre sides to the coin – some, like the critics of John Davidson, are dismissive and others covet an illness that no one should want. I often think about the influencers who have faked Tourette’s syndrome. Maybe they pretend to be ill for fame or because they think it’s funny. I can’t quite figure out their intentions, but I want to tell them to get a life.

The public’s awareness of Tourette’s syndrome ebbs and flows. After the BAFTAs, it felt like progress was set back a few years – strangers saw me tic while shopping and told me to go home. As this push and pull continues, I’ll keep educating people on what it’s really like to live like I do.