'I feel trapped': What life with Tourette's Syndrome is really like

FOR Sara Walding, 29, living with Tourette's syndrome has proved unpredictable, isolating and confusing.

“I feel trapped, trapped like a mouse,” she says.

It’s a condition that causes a person to make involuntary sounds and movements called tics, with symptoms ranging from sudden and violent mood swings to obsessive compulsions – one in 10 also swear erratically.

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For Ms Walding, those symptoms are an every-day reality.

Sara Walding

“I would do anything to be normal,” she said. “I hate living with it, I hate it.

“I wish I could wake up and it would be gone, but it is not going to happen.”

She said the urge to shout, swear or scream cannot be suppressed.

“It just feels like a twitch in my throat and it has to come out.

“I can’t help it.”

Ms Walding, who is from Cwmbran, had learning difficulties from a young age, her mum Hazel explains.

“When she was around six, we were on a tram to Sheffield to watch the ice hockey when she just started shouting,” she said.

“No matter what you said, she wouldn’t stop.

“We were referred to a psychiatrist who confirmed she had Tourette’s.”

Mrs Walding describes one incident where her daughter began to shake her head side-to-side with an unstoppable vigour.

“She made herself physically sick, it was so distressing to watch.”

“It was so upsetting. You feel so helpless.

“She was just begging for the tics to stop, pleading with me.”

Sara's mum Hazel

In primary school, she would “get the blame” for everything, her mother said.

“They would shut her in the hallway when she started ticking because she was an inconvenience to the other children.

“In the end, she actually ran out of school and the school didn’t know she had gone.”

Sara can’t remember this incident and struggles to recollect what life was like in primary school.

She said her memory loss could be a coping strategy for burying traumatic memories.

“I just remembered getting bullied, they used to call me all sorts,” she said.

When she moved onto high school, things didn’t get much better.

“I used to be bullied on the bus, on the way there and the way back.

“I just wanted to go home all the time I was there.

“I used to stay at home, faking illness.”

Sara Walding as a young girl

Her mother knew she wasn’t really ill, but she found it hard to send her daughter to school “just to get bullied”.

She then went to Pontypool College, where they had a specialised learning centre, but had to leave because a child had Asperger’s Syndrome and Ms Walding’s tics exacerbated the child’s problems.

When she left school for good, she was given a doctor’s note enabling her to claim benefits and living allowances.

“There is no way she could’ve held down a job,” her mother said.

But with changes to the way benefits are issued, she has had to appeal again and is yet to find out the decision.

“That’s making me anxious, if they stop my money, I won’t be able to live,” she said.

She currently lives in Cwmbran in a flat on her own in a building for supported living.

“I never thought I would see her in a place of her own, it’s great,” her mother said.

But she is often too anxious to leave the house without company.

“If I have a tic outside, I just feel embarrassed by people staring at me,” she said.

“Some people are rude, even when you explain.

“It’s upsetting.”

Sara Walding

And she says an incident in September “completely knocked my confidence for six”.

“I was kicked off the bus twice in the same week by the same bus driver.

“I was shouting swear words and the driver looked at me and sad, ‘Excuse me?’

“I said I had Tourette’s and she said: ‘That’s no excuse to use language like that’, and told me to get off.”

One woman who was there refused to get on the bus, instead choosing to stay with Sara until her father could collect her.

“I wish I knew who she was, to thank her,” Mrs Walding said.

At the time, a spokeswoman for Stagecoach said: “We have been made aware of the incident that took place yesterday.

“The operations manager has spoken with the driver in question.

“The driver has been advised of how to deal with the situation in future”.

The heart-rendering frustration felt by Ms Walding is that despite her tics, verbal outbursts and noises, she “loves to talk” - but has no one to talk to.

“I want someone to speak to," she said. "It is quite hard. It is not nice.”

Her personality, naturally, is bubbly and it shines through towards the end of our discussion.

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Though she struggles with anxiety and depression, she says she tries to remain upbeat.

“You are going to have negativity where you go.

“I just try to ignore the comments, it’s other people’s ignorance, not mine.

“I just want people to understand what I go through and raise awareness about Tourette’s.”

What is Tourette’s Syndrome?

Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics.

It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely.

Swearing is rare and affects only about one in 10 people with Tourette’s syndrome.

Examples of physical tics:

• Blinking
• Eye-rolling
• Grimacing
• Shoulder shrugging
• Jerking of the head or other limbs
• Jumping
• Twirling
• Touching objects and other people

Examples of vocal tics:

• Grunting
• Throat-clearing
• Whistling
• Coughing
• Tongue-clicking
• Animal sounds
• Saying random words and phrases
• Repeating a sound, word or phrase
• Swearing

It can lead to a number of other disorders, such as anxiety, sleeping troubles, migraines, attention deficit disorder and compulsive obsession disorder.