A dance teacher diagnosed with Tourette’s syndrome – meaning she has unpredictable tics where she whistles, blinks and sometimes swears – has said watching Lewis Capaldi’s “beautiful” Glastonbury performance left her “speechless” and she wants to raise awareness of the incurable condition so others do not feel “lost or alone”.
Bryony Munro, 24, a dance teacher who lives in Scotland, started experiencing symptoms of Tourette’s syndrome – a condition which causes a person to make involuntary sounds and movements called tics – when she was 12 as she started to spontaneously hiccup.
However, it was not until her early 20s, in summer 2021 – when her limbs started “jerking all the time” and she developed other tics, such as whistling, clearing her throat and blinking – that she received an official diagnosis, which she described as “bittersweet”.
“I was very happy to have that definition, but then knowing what comes with that was very daunting and scary; I was terrified,” Bryony told PA Real Life.
In the years leading up to her diagnosis, Bryony said people would stare at her in public, whisper, and talk behind her back, saying “She’s making it up” or “She’s faking it” – and this made her realise that “people are very misinformed of what Tourette’s is”.
“People treated me differently because they didn’t believe I was telling the truth and they tried to tear me down,” she said.
“I wish they would have just asked me questions rather than making up rumours behind my back that aren’t true.”
Bryony has since set up her own Instagram and TikTok accounts to address the most common misconceptions about Tourette’s, as she wants to raise awareness of the condition, but the “outlets” that have helped her through her darkest times are music, singing and dancing.
She said performing in front of an audience can be “terrifying” when you have Tourette’s, but she believes Capaldi’s moving performance at Glastonbury, where he appeared to struggle with an increasing number of tics while singing his hit song Someone You Loved, will help to change the way the condition is perceived.
“It was almost like an out-of-body experience because I just put myself in his shoes,” she said.
“My heart broke – not in a bad way – but seeing the amount of love he received from his fans left me speechless, it was just beautiful, and having so many people watch that live or online just brings so much awareness and takes the pressure off the Tourette’s community because they are beginning to see what it’s really like for people with the condition.”
Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics, and there is no cure, the NHS says.
Tics are not usually harmful to overall health, but physical manifestations, such as jerking of the head, can be painful, and may be worse during periods of stress or anxiety.
Bryony’s first tic came in the form of a hiccup or “inhale of breath”, which did not affect her daily life at the time, but her symptoms progressively worsened.
Her tics became debilitating during the Covid pandemic, which led to her diagnosis in 2021, but her lack of knowledge about the condition initially left her feeling “terrified”.
Her other diagnoses of obsessive-compulsive disorder (OCD), anxiety, depression and functional neurological disorder (FND) – which affects how the brain receives and sends information to the rest of the body and can cause Bryony to have absence seizures – added to her concerns as she feared she would have a “constant battle with her mind and body”.
“I think seeing how it was presented on TV and in the media, and initially having my own misconceptions about Tourette’s, made me feel terrified to have to live with it,” she said.
“Tics can be very damaging as there are very aggressive tics that can make you kick, punch, jump and literally jump out into oncoming traffic, which is terrifying.
“When my tics first started getting worse, I had this punching tick where I punched a wall, but some of my other tics, like my toes wrinkling, are not visible to others.
“I was very much in the dark to begin with, but doing research and reaching out to people was probably the best thing I could have done.”
While Bryony’s tics have not put her in any life-threatening situations, she said daily tasks, such as brushing her teeth or doing her make-up, can be challenging and time-consuming.
She cannot drive and, on days when her tics are particularly bad, she cannot cook, style her hair with straighteners or curlers, or use the kettle, as she could hurt herself.
“It’s so unpredictable and, right now, I’m not able to go anywhere on my own just in case I do have an episode where I might hurt myself,” she explained.
Bryony has “tools” to manage her Tourette’s, such as using stress toys to “keep (her) hands busy”, but she said she does not know where she would be without music, singing and dancing.
She teaches dance to pupils ranging from two-and-a-half years old to 30, and said focusing on something else “helps (her) tics melt away for a little while”.
She is training her golden retriever puppy Nala, whose name was inspired by Disney’s The Lion King, to become an assistance dog so she can “live a more normal life” in the future.
“Having that independence back again from taking Nala into work, to do shopping, maybe to go to the gym, it will be so relieving; the pressure will be enormously decreased,” she said.
“Even the social anxiety of being out of the house, having her with me will just be so good for me.”
Bryony, who lives with her “incredibly supportive” fiance Matthew, 31, a chef, wants to continue raising awareness of Tourette’s, and is even more inspired to educate others after Capaldi’s performance at Glastonbury in June, as she has seen the “love” he has received and does not want anyone to feel “lost or alone”.
“Knowing he had the support of every single person there; I couldn’t imagine the amount of love that he must have felt,” she said.
“I felt it through watching it through my phone, I fully felt all of that.”
She added: “You never know anyone’s full story or full life story, so accepting people for who they are, and accepting yourself for who you are, is probably the best advice I can give.
“Also, just be kind because you have no idea what anyone is going through.”
You can follow Bryony on Instagram or TikTok @brydoeslife
