BY DANIEL CULLEN
A Broadford teenager is helping to raise awareness of Tourette syndrome after receiving a diagnosis that finally provided answers to years of unexplained tics, misunderstandings and challenges both in and out of school.
Krista Nicolson, who is 15 and attends Portree High School, has been selling awareness laces (part of Tourette Scotland’s ‘Teale for Tourettes’ campaign) during Tourette’s Awareness Month, which runs from 15th May until 15th June.
The Free Press spoke to Krista, who said the campaign is about helping people understand a condition that is often misunderstood.
“Tourette’s Awareness Month is really important because many people with Tourette syndrome are misunderstood and can get into trouble because of it. The more awareness there is, the better people will understand it”, she said.
Krista explained more about growing up with the condition – even if she didn’t realise it was Tourette’s at the time.
“I started ticking from a very young age, but we didn’t know they were tics at the time. My tics became stronger when I was around nine years old and when I started high school they got much worse.”
The impact of the condition became increasingly noticeable as she got older.
“I got made fun of quite a lot because of my tics and because I didn’t have an explanation for them. It stopped me from doing certain things. If I’m feeling particularly ‘ticky’, I might not be able to take part. It’s affected some friendships, and it can also cause really bad tiredness and physical pain.”
Krista’s mother, Shona Nicolson, says she and her husband Ross spent years searching for explanations before Krista was eventually diagnosed last November.
“We first noticed facial tics when she was about four-and-a-half years old, but we thought she was simply adjusting to wearing glasses”, Shona said, “then, when she was six or seven she used to say she had ‘power’ in her hands and would shake them. We put that down to a child developing and growing.
“When COVID happened, she was around nine years old and I thought a lot of what we were seeing was linked to anxiety because so many children were anxious at that time. Tourette syndrome wasn’t something we, as parents, had considered. We always found another explanation for the movements.”
As Krista moved through secondary school, the condition began to affect friendships and social relationships.
“It was when she started secondary school that things such as tapping on people began to impact friendships and relationships. Seeing the sadness it caused her made us start asking more questions.”
The family sought support from professionals and received a Tourette’s diagnosis in November last year that helped explain many of the challenges Krista had experienced. Following the diagnosis, they contacted Tourette Scotland and became involved with the charity’s support network.
“Once she was diagnosed, we contacted Tourette Scotland and they were amazing,” Shona said.
The family later attended the organisation’s AGM in Perth, where Krista met one of Scotland’s most prominent advocates for Tourette syndrome, John Davidson, author of ‘I Swear’, an autobiographical book about his life growing up with Tourette’s in 1980s Scotland recently made into a hit film.
For Krista, it was a life-changing experience.
“Visiting the AGM and meeting John Davidson made me feel less alone. Realising there are other people living with the same condition as me made me feel like I was in the majority for once, rather than being the odd one out.”
Shona said the event was equally powerful for her as a parent.
“It was incredible to see Krista so relaxed around other people. Nobody stared, commented on, nodded at or questioned her movements and sounds. Her ticking was just accepted,” she said.
Since then, the family have been working with Tourette Scotland to raise awareness locally. Awareness laces are being sold through Portree High School, Buzy Vee in Broadford and Janine Morgan Hair in Borve.
“The support we’ve had from our families, friends and those supporting the cause has been amazing. We’ve sold 111 pairs so far and have 89 left. They’re £2 a pair and are teal, the awareness colour for Tourette syndrome. So if anyone wants to buy a pair you know where they are.”
Part of the family’s work has been challenging misconceptions about the condition – which around 1 in 100 people in the UK suffer from – particularly the belief that everyone with Tourette syndrome experiences involuntary swearing.
“Coprolalia is the one that makes you swear, but only 10-15 per cent of people with Tourette’s have it, although there is a stigma that makes people think all people with Tourette’s have it,” Krista said.
Shona said greater understanding, in addition to Krista wearing a Tourette’s lanyard has already made a difference for Krista, who is amongst the percentage developing Coprolalia.
“The fact she wears her lanyard now has given her confidence. When she suppressed her tics she found it exhausting. It affected her education because she was concentrating so hard on holding them in that she wasn’t hearing the lesson, and sometimes she’d have to leave class.”
Tourette Scotland has helped the family provide information to school staff and others who support Krista.
Shona believes one of the most helpful explanations she has heard came from Tourette Scotland chair Andrina Duncan when she said: “If you were to ask someone to stop a hiccup, that’s what it’s like asking someone with Tourette’s to suppress a tic.”
“You can stop it for a while”, Shona said, “but the act of suppressing makes the build-up more and they can have quite a severe tic ‘attack’.”
The family hope that by sharing their story they can help other people understand what living with Tourette syndrome is really like.
“We’re hoping that selling the laces, telling people about it and raising awareness will help people to know Krista a little bit better and help her feel more confident to carry on with her education.”
For Krista, awareness is also about making sure others with Tourette syndrome feel less alone.
“In September I’m going to a Tourette’s camp for young people under 18, and next year there will be more fundraising. Hopefully my dad is going to cycle the Etape to raise money for Tourette Scotland, too.”
As Tourette’s Awareness Month continues, both Krista and her family hope that greater understanding will encourage people to look beyond the condition and see the person behind it.
“The best thing people can do is be understanding, patient and kind,” Shona concluded.
