What Life is Like with Tourette Syndrome

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Michael Chichioco, a senior at San Francisco's Saint Ignatius high school, is a youth ambassador with the national Tourette Syndrome Association.  (Kitty Chen via Flickr)

Jess Thom says the word “biscuit,” about 16,000 times every day. Her brother-in-law counted once.

That’s just one of the tics that Thom, a London-based performance artist, has to manage as part of her life with Tourette syndrome.

“What disables me …it’s other people’s misunderstanding,” she says. “What’s exciting is that it’s something we all have power to change.”

Thom and several others with the condition discussed what life was like with Tourette syndrome on KQED Forum recently.

Tourette syndrome is far more common than people may realize, and many misperceptions about it still exist, Kevin McNaught, executive vice president at Tourette Association of America, said.

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Tourette syndrome is characterized by tics -- either motor or vocal -- and is considered a neurological disorder. It affects about 300,000 children in the United States, with even more undiagnosed due to delayed or missed diagnosis.

“It’s not a rare disorder," McNaught said, with a rate as high as 1 in 100 school age children.

Youth Ambassador Counters Misunderstandings

Michael Chichioco, a high school senior with Tourette syndrome, said he used to be bullied at school, with kids trying to trigger him to have outbursts.

“People got a kick out of trying to get me to say the bad words,” said Chichioco, a student at St. Ignatius, a private high school in San Francisco. “They would try to get me to say them in bad situations. The big challenge is to remember they don’t quite understand the syndrome.”

Self-reassurance has been one of the best coping mechanisms for Chichioco, he said, as has been realizing that a lot of people react badly to his tics because they don’t understand his condition.

“It’s easy to get down when people don’t seem to understand it,” Chichioco said. His tics come out more prominently when he is nervous or excited.

Now as a youth ambassador for the advocacy group Tourette Association of America, Chichioco said he works to spread awareness of the condition and counter the many misunderstandings.

For example, though Chichioco has a verbal tic where he says swear words as part of his Tourette syndrome, that particular manifestation, called coprolalia, is rare. Only about 10 to 15 percent of people with Tourette syndrome will have outbursts riddled with curse words, said McNaught.

A Neurological, Not Psychiatric, Disorder

Tourette syndrome is often incorrectly thought to be a psychiatric disorder, because it can have some behavioral features and symptoms that worsen at times of stress or anxiety. Because the condition often presents with anxiety, attention deficit hyperactivity disorder or obsessive compulsive disorder, it can be hard to differentiate the origins of the symptoms.

The symptoms of Tourette’s appear in early childhood but can be transient and reappear later in life, McNaught said. Because symptoms come and go and vary in severity, it often leads to a delayed or incorrect diagnosis until the children are much older.

Chichioco said he first had tics, muscle twitches involving his face head and neck at around age 6, but wasn’t diagnosed until age 13.

Chris Mason, author, of e-books "What Makes Me Tic: Living with Tourette Syndrome" and "Touretties," said he wasn’t diagnosed until age 20 after his mother became ill. The stress of facing her health issues brought out his tics more prominently, he said. His first tics were blinking his eyes really fast and tightly, he said.

In his childhood, before his diagnosis, Mason’s parents used to refer to his tics as his “bad habits.”

“A lot of parents have never heard of the word Tourette’s, “ he said, “even though there’s a hereditary component.”

Some scientific studies suggest that Tourette’s is genetic and is inherited as a dominant gene passed from parent to child, but it is not known for certain yet, according to the Tourette Association of America.

Treatment Options

The condition is treated with a combination of medication and behavioral therapy. But the medications can carry serious side effects like cognitive dulling or extreme fatigue, so people with Tourette often come up with other techniques of coping as well.

Mason, the author, said his medications cause extreme drowsiness. He could sleep 18 hours a day if given the chance. “Any time I sit down or lay down, I go to sleep,” he said. “Being an author, it’s taken away my creativity. It’s hard to write.”

Many people with Tourette syndrome develop tools to help them manage daily life with their tics.

Thom, the London-based performance artist, helps spread the word about her condition on a website called Tourette’s Hero. She has developed some coping techniques because she couldn’t tolerate medication side effects.

She uses padded gloves because she punches her chest hundreds of times a day. She said she has also begun using a wheelchair because her walking is “chaotic.”

When she started using the wheelchair, she noticed a difference in how people treated her. “People are less frightened of me now,” she said.

She said she doesn’t know why the word “biscuit" -- or "cookie" in the U.S. -- has such a prominent role in her life. She joked that she doesn’t think about biscuits nearly as much as it seems.

This tic inspired the title of a live show based on her experiences called “Backstage in Biscuitland.” It was performed at the San Francisco International Arts Festival earlier this month.

She said she decided to perform on stage in a theatrical production because it was the only seat in the theater from which she couldn’t be asked to leave. Having motor and verbal tics makes it highly challenging for someone to attend theater, a space in which people are expected to sit still and quietly, she said.

Being in romantic relationships can be challenging for people with Tourette syndrome.

“I’ve been in a couple of romantic relationships, Mason said, comparing the situation to employment. “You have to decide if you are gonna tell someone before you get the job or right when you get in the relationship. When I put it out there, it ends shortly after.”

Chichioco said he hasn’t yet been in a romantic relationship.

“The fear of finding someone you really like, and having them say, ‘You have Tourette’s, I can’t handle it,' " says Chichioco, "It’s hard to show vulnerability in that context. It’s eventually something I’ll have to face.”

And dating someone else with Tourette syndrome would have its own challenges.

“When I’m with other people with Tourette’s, we mirror our tics," Chichioco said. “That could be a hindrance. At the same time, it would be great to have two people that understand each other.”

Empowerment has been the best medicine for his condition, Chichioco said. He even gave a TEDx youth talk last year.

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“I found throughout high school, I was uptight about it,” he said, but that changed when he started speaking openly about his experience to friends. “I felt empowered by the backing of people. The best treatment is being honest and speaking about it.”