Tourette Syndrome (TS) has been in the headlines recently, with celebrities like Lewis Capaldi and Billie Eilish speaking about their experiences. Unfortunately, due to misinformation and misconceptions, many people hold biased views about TS, leading to stigmatisation and misunderstanding.
Image description: teal background, to symbolise TS, with white lamp to the left, to symbolise awareness.
TS is a neurological condition characterised by involuntary, repetitive movements and vocalisations known as tics. It's a condition that comes under the umbrella of neurodiversity, alongside ADHD and Autism. By learning more about the condition we can develop empathy and encourage inclusivity and positive relationships with those of us living with this condition.
The myths around Tourette Syndrome
Myth 1: TS is a childhood disorder that disappears in adulthood.
Reality: TS is a neurodevelopmental disorder that usually arises during childhood, with symptoms that may diminish or change over time for some individuals, but Tourette's is a lifelong condition. In fact, many people continue to experience tics and associated challenges into adulthood, however, individuals with TS can lead fulfilling lives, with understanding and appropriate support.
Myth 2: Everyone with Tourette's uncontrollably swears (known as, coprolalia).
Reality: Contrary to popular belief, coprolalia, which involves involuntarily uttering obscene words, is rare in people with TS. Only around 10% of individuals with TS experience coprolalia, while the majority of tics are unrelated to swearing. Removing this stigma could help people with TS to pursue social and professional relationships without prejudice - spread the word!
Myth 3: People with TS can always control their tics if they try hard enough.
Reality: Tics associated with Tourette's are involuntary and occur spontaneously. It’s true that some individuals can suppress their tics temporarily, but this requires great effort and often results in discomfort or even increased intensity of the tics later on. So don’t fall into the trap of associating tics with poor self-control and don’t demand people with TS to stop their tics, as this may lead to significant distress.
The impact of stress
Stress can be a potential exacerbating factor for tics in individuals with TS. While stress does not directly cause Tourette Syndrome, it can play a role in influencing the severity and frequency of tics, which Lewis Capaldi has recently spoken about in his experience. Stressful situations, such as academic or work pressures, interpersonal conflicts, or major life events, can trigger or worsen tics. Increased stress levels may lead to an escalation in tic frequency, intensity, or complexity.
Furthermore, there can be a cyclical relationship between tics and stress: tics themselves can cause stress and anxiety in individuals, leading to a heightened focus on the tics and potentially exacerbating them further. This cycle can create additional stress and impact an individual's overall wellbeing. Managing stress effectively can help individuals with Tourette's better cope with their condition.
Developing healthy coping mechanisms and stress reduction techniques, such as relaxation exercises, mindfulness, and engaging in activities that promote wellbeing, may help reduce tic severity and improve overall quality of life. But it's worth mentioning that stress reduction techniques and coping strategies may not eliminate tics entirely. Tics are involuntary and often uncontrollable, and managing stress may help individuals better navigate their tics but may not eliminate them completely.
How can we show our support?
Building positive relationships with individuals who have Tourette Syndrome involves empathy, patience, and understanding. Here are some practical tips for fostering a supportive environment:
Educate yourself: take the initiative to learn about Tourette's by reading reliable sources and listening to personal experiences. This knowledge will help you understand the condition better and dispel any preconceived notions.
Communicate openly: if you know someone with Tourette's, start an open and respectful conversation about their experiences. They will likely appreciate your willingness to learn and understand their experiences. Approach the conversation with curiosity and empathy, allowing them to share without assumptions.
Be accepting and nonjudgmental: acceptance is key when building relationships with individuals with Tourette's. Avoid making negative comments or jokes about their tics, as this can perpetuate stigma and create a hostile environment. Treat them with the same respect and kindness you would extend to anyone else.
Focus on the person, not the tics: it's essential to see the individual beyond their tics. Remember that Tourette's is just one aspect of who they are. Engage in conversations about their interests, hobbies, and goals. By emphasising their strengths and talents, you can foster a sense of belonging and build a genuine connection.
Respect personal boundaries: while it's important to be understanding, it's equally crucial to respect personal boundaries. Some individuals may be comfortable discussing their Tourette's openly, while others may prefer to keep it private. Be mindful of their preferences and avoid pressuring them to disclose more than they are comfortable with.
Offer support: show your support by being patient and accommodating. Understand that tics can be unpredictable and may vary in intensity. Be patient if they need to take breaks or have accommodations in place to manage their symptoms. Small gestures of support and understanding can go a long way in creating a positive and inclusive environment.
Advocate for inclusion: act as an ally by advocating for inclusivity in your workplace or social circles. Encourage others to educate themselves about Tourette Syndrome and challenge misconceptions. By fostering a culture of acceptance and understanding, you can help create a more inclusive environment for individuals with Tourette's.
Share these tips with your friends and family, and remind your colleagues to read this blog too!