Perth mum fighting for awareness for Tourette’s Syndrome after frustrating interaction with police

For Sophie Stack, simple things like going through an airport, entering nightclubs, taking exams, and even talking to people face-to-face can be a struggle.

The 33-year-old has been fined and banned from nightlife after police and bouncers mistakenly believed she was incapacitated.

These mix-ups are because Sophie suffers from Tourette’s syndrome, which causes her to tic and twitch uncontrollably – and it has even caused confusion in hospitals.

After suffering a mild stroke, the mother-of-two was surprised to even have to explain her condition to doctors and nurses during her stay in the neurology ward.

Due to her ongoing frustrations with first responders and medical personnel, Sophie fights to raise awareness about the misunderstood condition.

“How are we in this medical field and I’m in a neurology ward with a neurological disorder and no one knows what Gilles de la Tourette is?” Sophie told FEMAIL.

Tourette syndrome is a nervous system disorder that causes people to have involuntary tics that are sudden movements, jerks, or noises.

Sophie’s tics manifest in clenching her limbs, blinking, coughing, sniffling, and head movements and are exacerbated when she is stressed or tired.

In October, a code 1 stroke shut down the left side of her body and she was rushed to hospital, where her tics confused hospital staff.

“I was sitting there waiting for my mom to come and one of the nurses thought I was having a seizure. I said, “I’m just ticing, isn’t that on my card?” said Perth’s mother.

“I was in neurology with a neurological disorder, and I had to teach quite a few people who didn’t know what Gilles de la Tourette was or what it involved.”

She faced further challenges when doctors ordered MRI and CT scans that required patients to lie very still for up to 90 minutes.

“I was like, ‘well I can’t, how do you expect me not to move?’ and they told me to keep calm,’ Sophie recalls.

She said she spoke to several doctors and nurses before anyone listened to her concerns and recommended sedation for the scans.

“I didn’t know that was an option. I still had to push really hard after she sent the recommendation,” Sophie said.

“I feel like sometimes it’s like hitting my head against a brick wall because I’m fighting for my rights and trying to educate at the same time.”

Sophie was diagnosed with Tourette’s syndrome early on at the age of five, as both her mother, Leonie, and grandmother suffered from the same condition and recognized her symptoms right away.

She said that while awareness about the condition has grown since she was bullied for it growing up, there are still many misunderstandings.

The mother explained that people with Tourette’s may have an increased number of intrusive thoughts that cause them to do or say uncontrolled things.

“When Covid happened and I went to the supermarket I was coughing and sniffling and clearing my throat. People looked at me and almost ran away,” she said.

Our brain tells us “now is a good time to do something inappropriate,” and it happens. What we do does not reflect who we are or what we believe in.’

She has had many frustrating incidents with first responders such as paramedics and police officers, as well as bouncers while out with friends.

“I would get in touch with a few who would assume, even if I was designated a driver, that I was under the influence or drunk. They would attack or locate me and say ‘she has to leave’ and I haven’t even had a drink,” she said.

“That’s why I get really nervous and scared now when I’m driving and they’re doing breath tests for everyone.”

While learning to drive at the age of 16, Sophie was in the car with her mother when she panicked after seeing a police officer.

“My leg started tapping so it’s like I kind of shake and I accelerated and of course they pulled me over,” she said.

Although Sophie accepted her misconduct and was happy with the fine, it was the animosity of the cop who stopped her that bothered her.

“They didn’t care — they said you were just making excuses, I don’t want to hear it, you’re speeding, you can’t do this.” It was the rudeness of it,” she said.

If Sophie ever comes into contact with care providers, she will ‘suppress’ her tics, which can later cause a ‘tic attack’.

“The longer you hold down, it’s like holding in a sneeze…it feels like you’re under a lot of strain and it all builds up,” she said.

Sophie even tries to control her tics when talking to people face-to-face, after years of being teased about it at school.

“I was embarrassed and bullied a lot, so when I saw people one-on-one I just held it, which doesn’t help,” she said.

“Once they walk away, it all comes out – it’s very hard to suppress.”

Sophie’s eldest son Franklin, eight, also has Tourette’s Syndrome and she hopes to raise awareness and understanding of the condition.

“People think we can help it, we can stop it or we know what we’re doing. Usually we apologize when we say or do something that is inappropriate,” she said.

‘We are also happy when people laugh, just laugh with us, not at us. We like to explain, and many of us are open to being asked kindly, not judged.”

Tourette Syndrome Association of Australia urges first responders leaders to provide education and thorough training to staff to avoid negative interactions with the Tourettes community.

For Tourette Syndrome Awareness Week, the nonprofit hopes to better educate the public about Gilles de la Tourette and how best to respond to a person with the condition.