Although most people have heard of Tourette’s Syndrome, they often wrongly think it’s a rare condition that always involves involuntary swearing.
But the reality of Tourette’s Syndrome (TS) is that it’s a complex, inherited neurological condition which only features involuntary swearing (coprolalia) in 10-20% of cases, and isn’t as rare as you might think – more than 300,000 children and adults live with it in the UK, according to the charity Tourettes Action.
And a number of celebrities have opened up about their Tourette’s, including Lewis Capaldi, whose shoulder twitches because of the condition, and Billie Eilish, who has said she experiences tics like clicking her jaw and tensing her arm muscles.
On Tourette’s Awareness Day (June 7), which takes place during Tourette’s Awareness Month (May 15-June 15), Tourettes Action wants to raise awareness that rather than involuntary swearing, the key features of TS are tics. These are involuntary and uncontrollable sounds and movements which can range from limb and head jerking, whistling, grinding teeth and clenching the jaw, to legs freezing, or involuntary jumping.
Many people with the condition will also have co-occurring features and conditions such as attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), and anxiety. Also many experience pain because of their tics, often caused by repetitive involuntary actions such as hitting themselves, chewing the inside of their mouth, etc.
During the awareness day and month, Tourettes Action is running the #ItsWhatMakesMeTic campaign in a bid to destigmatise Tourette’s by educating people and showing them the reality of living with the condition.
“Research tells us that many people will experience discrimination because of their Tourette’s, and 75% of people will actively conceal their condition for fear of discrimination and people’s reactions towards them,” says Emma McNally, CEO of Tourettes Action.
“People with Tourette’s often feel isolated and excluded because the level of awareness in society is so low.”
One of the many things that can make life difficult for people with TS is the way others react to their tics, and McNally explains: “We also hear many people don’t know what they should say or how they should act towards someone with Tourette’s. It’s our goal to change that. We want to use Tourette’s Awareness Month to help raise awareness of the condition, to stop the stigma and enable people who live with Tourette’s to be fully included in society.”
Here, McNally outlines the best ways for people to react when someone with Tourette’s tics…
1. Remember what comes out of their mouth isn’t what they’re thinkingAlthough 80-90% of people with TS don’t have involuntary verbal tics that make them swear or say inappropriate things, McNally stresses that whatever someone with verbal tics says isn’t connected to what they’re thinking. “Verbal tics aren’t a reflection of someone’s thoughts or emotions, so don’t take offence,” she advises.
2. Don’t draw attention to the tics
If you notice someone ticcing, it’s best to be patient and not draw attention to them, says McNally. “By pretending not to see or hear the tics, you allow them to feel more at ease in social situations,” she explains.
3. Don’t make assumptions
Some tics, for example, can take the form of frequent sniffing or clearing of the throat, explains McNally, and she stresses: “So do not assume that the person has a cold and thrust a tissue in their hand.”
4. It’s OK to laugh – if they areMcNally says if the tics are funny and the person ticcing finds them funny, then it’s OK to laugh, but she stresses: “Laugh with them, not at them.”
5. Ask questionsWhen interacting with someone who has Tourette’s, instead of making assumptions, ask them questions, suggests McNally. “It shows you care and want to understand. Just be sure to ask politely and at the right time, when they aren’t overwhelmed or in distress.”
6. Be understanding when they’re strugglingMany people with Tourette’s often need to suppress their tics for a while, or in certain situations, explains McNally. “So if they disappear, or take themselves out of the situation, be understanding and provide some sort of acknowledgement that you can see they’re struggling – a kind smile should do it.”
7. Don’t stare
Think about how the person with Tourette’s may feel about your reaction, and don’t stare at them. “If you can’t ignore someone ticcing, just smile at them kindly – but not in a pitying way – to reassure them they’re not bothering you,” suggests McNally.
8. Take their lead & don’t fussMcNally explains that if someone with Tourette’s is clearly distressed and having a tic attack, it’s likely they won’t be able to interact with strangers and just need to get to a secure, quiet spot where they can let the tics go without fear of judgement. “Even well-intended questions or offers of support can sometimes actually make them feel worse,” she says, “so the best thing to do is to ask calmly if you can help them and then let them tell you what you can do. Otherwise, don’t fuss, be patient and give them space and privacy.”9. Don’t take photos
Again, think how the person with Tourette’s will feel, and don’t film or take pictures of them, warns McNally, who points out: “As with any situation, you need someone’s permission to photograph them”.
10. Set a good example for kids
If you’re with children, make sure they aren’t pointing or laughing, advises McNally, who adds: “Set the right example and explain the condition to them later.”
