26/02/2026
More Than A Headline...
Today I have decided to write about something very close to my heart. I have debated whether I should or not, but it’s something that truly needs more attention, and more positive attention rather than negative.
This week there’s been a lot of discussion about Tourette’s following comments made at the British Academy Film Awards (BAFTAs). Much of the attention it received was negative, and that saddens me deeply. What many people see as a throwaway joke or a moment of controversy is, for families like ours, everyday life.
My daughter lives with Tourette’s, and I can assure you, it’s not easy.
Tourette syndrome is a neurological condition that causes involuntary sounds and movements known as tics. These can be motor tics (physical movements) or vocal tics (sounds or words). And while many people associate Tourette’s only with swearing (known as coprolalia), the reality for most people is far more complex and far less understood.
My daughter is one of the few who experiences severe, complex tics, both verbal and physical. She can spend her days like a prisoner within her own body, with no control over what she may or may not say. She can spend entire days physically attacking herself as a result of her tics, and while we as a family try to protect her and prevent her from coming to harm, there is nothing more heart-breaking than watching your child fight against their own body.
What many people also don’t realise is that tics can be incredibly painful. Repetitive movements can strain muscles, dislocate joints, cause bruising, headaches, and exhaustion. When those movements involve slapping, pinching, punching, jerking, or forceful motions, the physical toll and bruises quickly build up. This isn’t just “quirky behaviour”, it can be physically debilitating.
There is also something called a premonitory urge, a build-up of intense physical tension that comes before a tic. Many people describe it as an itch that has to be scratched, or pressure that has to be released. Suppressing tics can sometimes be possible for short periods, but not everyone can suppress them, and when they do it often feels like shaking a bottle of fizz. The pressure builds and builds internally, becoming more uncomfortable and painful, until eventually it explodes. When that happens, many people experience what’s known as a “tic attack”, a prolonged episode of severe, uncontrollable tics that can last minutes or even hours.
So, when people say, “Can’t she just stop?”, the answer is NO! it’s not that simple. And suppression comes at a cost.
There is also a cruel irony that many people with Tourette’s will recognise, and that is, if there is something you absolutely should not say or do in a quiet room, during a serious moment, or in a public setting, that is often exactly what the brain will latch onto. Tics are frequently triggered or amplified by anxiety, stress, or heightened emotion. The more inappropriate or forbidden something feels, the more intrusive it can become. It’s not intentional, it’s not chosen and it certainly doesn’t come from a place of hate, or represent their true feelings or beliefs!, most people who live with Tourette’s will be equally as shocked or upset about some of the things that they vocalise during a tic!
I have seen my beautiful, funny, intelligent daughter become almost a recluse in recent years, unable to experience the same life experiences as most young women in their 20’s. Why? Because of the lack of knowledge and empathy surrounding her condition.
There is the constant fear that she may say or do something in public that causes offence to others and the repercussions if it does, not because she wants to upset people, but because her brain misfires in a way she cannot control. There are the stares. The whispers. The judgement.
And then there’s the loneliness.
Most of her “friends” slowly drifted away when her tics began five years ago. Not because she changed as a person, she’s still the same kind, funny, loving soul she’s always been, but because understanding requires effort, and sadly not everyone is willing to make it.
Another harsh reality is the lack of accessible medical support. While there are treatments that can help manage symptoms, including behavioural therapies and, in some cases, medication, specialist services are limited and waiting lists can be incredibly long. Access to therapies such as Comprehensive Behavioural Intervention for Tics (CBIT) is not always readily available, and for many families, private treatment is the only option, something that simply isn’t financially possible for everyone.
Tourette’s is not a punchline. It’s not attention-seeking. It’s not bad behaviour. It’s a complex neurological condition that deserves awareness, compassion, and informed conversation.
If recent headlines have done anything, I hope they open the door to education rather than ridicule. Because behind every diagnosis is a person, and behind that person is a family doing their very best.
And to my daughter, I love you, I’m incredibly proud of you, I admire your strength and how you get up every morning and try! You’re kind, compassionate and an absolute warrior!
To every single person living with Tourette’s, please know there are others who see you, and understand you. Be proud of who you are!
And to everyone who reads this, I ask you to kindly, please just take a few moments to educate yourself about conditions before commenting or passing any judgement.
With warmth, Love and
Liz 💜Xx
