For many people, Gilles de la Tourette syndrome is nothing more than blurting out inappropriate words and phrases, including name calling. Celebrities and even politicians have used the word Tourette to relieve the tension of an embarrassing situation or to excuse their misjudged outbursts. Many of us have chuckled or chuckled without giving too much thought to Tourette’s condition and the people affected by her.
But can derogatory jokes and humor create a climate where stigma and discrimination are tolerated and even permitted?
For our recent study, we set out to find out whether people with Tourette’s stigma and how it can affect their lives. We used an online survey in which 199 adults in the UK took part with Tourette, 20 of whom were also interviewed at length.
Participants highlighted how jokes about their condition were, perhaps inadvertently, used as a weapon against them and contributed to the syndrome not being taken seriously, leaving some unprotected in the face of discrimination. Many participants pointed out that they had never been considered eligible for flexible working arrangements despite their disability. Others mentioned that they had never received overtime for exams or extension for schoolwork. One participant, recounting his school years, explained how his parents were summoned to his school:
They [the teachers] said: “Either you take your child out of school by option and we’ll keep him in our books and he can do his exams here, or take him out.” ”
Our participants also believed that the media, focusing only on profanity, mocks and oversimplifies the condition. One participant described it this way:
It’s like Tourette is just a fucking word. It’s not the pain, the fact that you don’t have to open your brain to make the pain go away. Just the curse. And it’s just sort of like, “You’ve got Tourette, I’ve got Tourette, everybody’s got Tourette” if they swear.
A poorly understood condition
Yet the main feature of the disease is actually the tics (sudden jerks that cause involuntary body movements) and sounds. The severity of tics can vary. Some of them can be unnoticeable, but others can be painful and debilitating, making everyday life difficult.
Many people with Tourette also have other conditions, such as attention deficit hyperactivity disorder and obsessive-compulsive disorder, which can further affect their well-being. Despite these difficulties, our participants said that media portrayals and jokes about the disease contributed to the perception of the people of Tourette as a “minor handicap”, undeserving of the support that other people with disabilities may receive. One participant said:
Of course, they can put me aside, because they don’t take Tourette’s seriously. They can laugh at us and laugh at us and say it’s just a joke. Because that’s what Tourette is to them, a joke.
Many participants also believed that mockery and trivialization of the disease resulted in inadequate health care, including inexperienced GPs who did not recognize the main symptoms of the disease, making the referral process unnecessarily long and complicated. One interviewee recalled going to the doctor several times:
They didn’t seem to know… they offered me some advice. I had to go back and say, “No, I want to see a specialist. And then I went to the Tourettes Action site, and they gave me a list of specialists. I had to tell the general practitioner who to contact. I must have said this several times. He kept saying he couldn’t make the dismissal.
Others spoke of the lack of specialist services, including inconsistent advice from their doctor. This inconsistency could be due to the fact that the UK National Institute for Health and Excellence in Care (Nice) has not published guidelines for the treatment of Tourette. General practitioners rely on the Nice guidelines to recommend the most appropriate and up-to-date treatment and care for specific conditions. The absence of these guidelines may echo the lack of attention this condition has received compared to other disabilities, which are taken more seriously.
The pandemic has highlighted the difficulty of getting help for children with Tourette – families feeling neglected by the NHS.
If Tourette continues to be treated as a joke, the challenges people face in their daily lives will continue. It’s time to take Tourette seriously.