‘I Don’t Need To Hide My Tics After Charity Song’

A woman from Pool has been chosen to sing in a choir to record a song to highlight Tourette’s syndrome.

Sophie Willoughby, 38, joined a group of singers who all have the condition to record the Nina Simone song ‘Don’t Let Me Be Misunderstood’, external to help charity Tourettes Action raise awareness.

“It’s the perfect song for this campaign because Tourette’s syndrome is one of the most misunderstood disorders,” Mrs Willoughby said.

Tourettes Action said the condition affects one in 100 school-aged children and more than 300,000 people in the UK.

‘I didn’t know’

Mrs Willoughby said her symptoms began when she was eight years old when she started grunting, coughing and humming.

They worsened, she said, and she was diagnosed with Tourette’s syndrome three years later in 1998.

Mrs Willoughby said school had been very difficult and she had not wanted to go because she had not been sure what was happening.

She said: “I didn’t know what was going on, I’d blink, I’d tic and my eyes would twitch.”

This drew looks from other pupils, she said, and from teachers, too.

“I had a teacher mimic me,” she said.

“I didn’t know I was doing it so I didn’t know why the teacher was mimicking me back and it was really upsetting.”

Child psychologists were assigned to her, but she said they did not understand why she did not want to go to school.

“I was the child that was treated like I was misbehaving, with them saying I was a problem and that I didn’t want to go to school,” she said.

‘Comfortable in my own skin’

It is people with Tourette’s syndrome being misunderstood that inspired Mrs Willoughby to take part in the charity music video.

She said: “I’ve never been around people with Tourette’s syndrome so to go to London and do that video with so many wonderful, beautiful people – to be accepted and to feel comfortable in my own skin and with who I am and to feel free to tic was the most special experience I’ve ever had.”

She said being with others with the syndrome made her realise how much she had hidden her tics.

“From that I have learned so much. To feel accepted and accept myself and I now feel I don’t need to hide who I am and I don’t need to hide my tics,” she said.

She said: “The experience has had a longer lasting lifetime effect.

“I am who I am and I am learning not to be embarrassed because I’ve always felt I’m the weirdo, I was always treated like the weird child, like the problem.

“Being in that room was a sort of love and acceptance from people that understand and that was the amazing part for me.”