I've lived with Tourette's since I was a teenager, and no, it's not just involuntarily swearing – this is what it's really like living with the misunderstood (and mocked) condition

"Tourette’s has always been an easy thing to make fun of."
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Welcome to July's mental health column by writer and author Beth McColl, where she opens up about living with Tourette's. Beth is the author of 'How to Come Alive Again', which is a relatable and honest practical guide for anyone who has a mental illness. She's also a v funny gal on Twitter.

I have Tourette’s. Despite living with it for most of my adolescence and adulthood, and despite all the work I’ve done on my self-acceptance, that sentence still feels heavy with a kind of conspiratorial, confessional weight, as though I’m admitting to something shameful rather than disclosing a neutral, medical fact about myself.

Tourette’s (or Tourette) Syndrome is a neurological condition that causes a person to make involuntary movements or sounds. It isn’t the only tic disorder, and nor is it the only cause of tics. Diagnosis usually requires a person to have two different motor tics and a vocal tic for over a year. The intensity of a person’s symptoms can change gradually over time, or fluctuate across days or weeks.

Illustration by Chelsea Hughes

The impact of the disorder can be relatively minor – an irritation and occasional embarrassment – or debilitating; keeping a person from working or functioning easily day-to-day. This impact depends not only on the severity of symptoms, but also on other factors such as access to care, family and educational support, attitudes of employers and whether a person also has a common co-morbid condition such as ADHD, ASD, OCD.

Though Tourette’s isn’t a mental illness, it’s often minimised and misunderstood in similar ways. It can be used to describe a person who swears a lot, just as OCD is lazily applied to tidy people and Bipolar to someone experiencing a few small shifts in mood. Tourette’s has always been an easy thing to make fun of. When researching this piece I started to type ‘Tourette’s comorbidities' into a search bar. The third suggestion was ‘Tourette’s compliation try not to laugh.’ It’s treated as wacky and unnerving, pantomimed in shouted obscenities and exaggerated facial movements.

In reality, most people with Tourette’s don’t experience Coprolalia (uncontrollable swearing or repeated, inappropriate speech), though it remains one of the most stigmatised symptoms, often misread as aggression or antisocial behaviour. My discomfort at these jokes isn’t for some vague reason of ‘outrage’ or ‘wokeness’. They’re stigmatising, trivialising, and actively make it even harder to challenge and change conversations around difference, mental illness, disability, and neurodiversity, which keeps people from the care and compassion crucial for a safe and dignified life. They’re also absolute sh*t craic.

I’ve had tics since I was a child. The first I can remember was a compulsive throat-clearing when I was in primary school, something which confused me, and worsened when I anxiously tried to suppress it. At secondary school, I developed a facial tic in the right side of my face and at 15 I was prescribed Haloperidol, an antipsychotic with a strong sedative effect. The pills, taken daily, made me feel exhausted and detached and though there was some improvement in my tics, I stopped taking them after only a few months. Things got a little better after my GCSEs, and then worse in sixth form. During my A-Level exams, I’d often have stop mid-sentence to flex my fingers and clench and unclench my fist, something which continued at university.

Nowadays my tics are far more well managed and predictable, though they’re still something I deal with daily. On good days they’re mild, hardly noticed. On bad days, they’re a frustrating set of increasingly uncomfortable compulsions and movements, depleting my mental resources, distracting me from work, and keeping me from feeling present. Rare as these days are, I end them exhausted, emotional, and often in a lot of physical pain.

As hard as living with Tourette’s can be, I’m grateful that my attitude towards it is now (mostly) one of calm indifference. Therapy has helped, as has research, CBT workbooks, physical exercise, building self-compassion and connecting with other people who live with it. I’m not all the way there. I still struggle to watch videos of myself, recordings of podcasts or panel appearances I’ve made, fun and proud moments in my life that I don’t yet have full access to. I’ve turned down TV work and live events, and can still feel embarrassed and anxious when explaining it to a new friend or partner or enquiring stranger.

Crucially though, I’m kind to myself when this happens. I no longer feel it necessary to apologise for what’s out of my control. Someone else’s discomfort is their domain and their domain alone. My business lies in living richly and self-compassionately, exactly as I am. My Tourette’s is simply a part of the landscape, a feature among many, one component of a complex whole. I love spaghetti, spicy margaritas, speculative sci-fi novels. I hate lentils. I collect matchboxes. I have green, short-sighted eyes, size 6 feet. Sometimes my body does things that are out of my control. I’m pretty chill about it, and I invite you to be chill with it too. If not, that’s alright. The world keeps turning, time keeps ticking on.