An expert from Tourettes Action explains the key features of this complex condition and how to best react to those affected.
Even though most of us have heard of Tourette’s Syndrome, many usually wrongly think it’s a rare condition that always involves involuntary swearing. But the reality of Tourette’s Syndrome (TS) is that it is a complex, inherited neurological condition which only features involuntary swearing (coprolalia) in 10-20% of cases.
According to the Charity Tourettes Action, more then 300,000 children and adults live with it in the UK. Recently, a number of celebrities have opened up about their condition such as 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.
READ MORE: Bustling seaside town that's new hotspot for unexpected crowd
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.
People who have Tourette’s will also have co-occurring features and conditions such as attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), and anxiety. Many people also experience pain because of their tics, which is often caused by repetitive involuntary actions such as hitting themselves, chewing the inside of their mouth and more.
Tourettes Action is running the #ItsWhatMakesMeTic campaign, hoping to destigmatise Tourette’s by educating people and showing them the reality of living with the condition.
Emma McNally, CEO of Tourettes Action said: “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.
“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.”
Emma has outlined 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 thinking
Although 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. She said: "Verbal tics aren’t a reflection of someone’s thoughts or emotions, so don’t take offence."
2. Don’t draw attention to the tics
McNally said if you notice someone ticcing, it’s best to be patient and not draw attention to them, “by pretending not to see or hear the tics, you allow them to feel more at ease in social situations.”
3. Don’t make assumptions
Some tics, for example, can take the form of frequent sniffing or clearing of the throat. She added: “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 are
McNally said if the tics are funny and the person ticcing finds them funny, then it’s OK to laugh, but she added: “Laugh with them, not at them.”
5. Ask questions
When interacting with someone who has Tourette’s, instead of making assumptions, ask them questions, McNally suggests. She said by doing this, “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 struggling
Many people with Tourette’s often need to suppress their tics for a while, or in certain situations, explains McNally. She said: “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
McNally said: “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.” Think about how the person with Tourette’s may feel about your reaction, and don’t stare at them.
8. Take their lead & don’t fuss
McNally explained 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. She said: “Even well-intended questions or offers of support can sometimes actually make them feel worse.
“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
Think how the person with Tourette’s will feel, and don’t film or take pictures of them, warns McNally. She said: “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 added: “Set the right example and explain the condition to them later.”
Life through a new lens. We are Curiously. Follow us on TikTok, Instagram, Facebook and Twitter.
READ NEXT:
