Beyond the Fame: Lewis Capaldi’s Journey with Tourette Syndrome
Lewis Capaldi is known for his captivating voice and lyrics to match. He has performed his hits, “Before You Go”, and “Someone You Loved” all over the world. He is a Scottish singer-songwriter and musician who has performed in front of hundreds of thousands of adoring fans.
During his show in 2023 at the Glastonbury Music Festival, Capaldi started to show difficulty finishing the hit, “Someone You Loved.” Eventually, he turned away from the microphone and stopped singing. The crowd took over for Capaldi and sang the lyrics together, finishing the song as a group.
The musician was having trouble singing due to a flare up of tics, due to his diagnosis of Tourette Syndrome. Capaldi reported that he did not receive his diagnosis of Tourette Syndrome until later in life. He stated that looking back, there were signs such as shrugging his shoulder involuntarily, but he did not make much of it and chalked it up to a nervous habit. As he got older, the symptoms were effecting his everyday life more and more. Lewis received his diagnosis at the age of 25.
He starred in a documentary titled, “Lewis Capaldi: How I’m Feeling Now” showing the struggles he faces due to his diagnosis. The documentary also brought to light how much empathy, compassion, and awareness of someone’s diagnosis can make a positive change.
What is Tourette Syndrome?
According to the Mayo Clinic, Tourette Syndrome is a neurodevelopmental disorder that involves repetitive movements and unwanted sounds that can’t be easily controlled. The cause of Tourette Syndrome is unknown but may be a combination of genetic and environmental factors.
According to The Tourette Association of America, Tourette Syndrome and other Tic Disorders combined occur in as many as 1 in 60 school aged children in the United States. The disorder may not persist into adulthood and can improve with age. In some cases, it will continue into adulthood. Tourette Syndrome is 3-4 times more prevalent in males than females.
What is a tic?
Tics are a major symptom of Tourette Syndrome. They are involuntary movements and sounds that can vary in severity. Tics can interfere with a person’s daily life by causing disruption in communication, changes to speech, possibility of injury due to involuntary movements, pain, and difficulty in certain social situations. Tics can also change over time.
There are two types of tics: motor and vocal. Motor tics are movements that are involuntary and unwanted. Examples of motor tics include:
- Shoulder shrugging
- Blinking repeatedly
- Jaw movements
- Head bobbing
- Arm jerking
Vocal tics include sounds. Some vocal tics can also produce words that are socially inappropriate or out of context. A person may start with motor tics and change to vocal tics later in life. Examples of vocal tics include:
- Sniffling
- Clearing their throat
- Shouting
- Laughing out of context
- Swearing out of context and at inappropriate times
What is it like?
People who experience Tourette Syndrome report that their tics can become more severe if they are tired, sick, stressed, or excited. People who are diagnosed with Tourette Syndrome sometimes describe it as a roller coaster. Some days the tics are manageable or not present at all. While some days they are severe enough they impact life, change plans, or stop activities while they are happening.
Tics are involuntary and a person who experiences Tourette Syndrome does not want the tics to occur. Some people report that they can control their tics, but it is extremely difficult and tiring. After a person suppresses their tics, especially if it is for an extended period of time, their tics can become much worse because they were bottled up for so long.
How you support a person who is diagnosed with Tourette Syndrome is individualized and will not look the same from one person to another. It is important that you talk with the person to see what works best for them and how they want to be supported.
Things to remember when supporting a person who is diagnosed with Tourette Syndrome:
- Do not call attention to the tics while they are happening. Tics are unwanted and involuntary, so drawing attention to them could cause a person to have increased anxiety, feel self-conscious, embarrassed, or forced to suppress their tics.
- Be patient with the person. If a person is experiencing tics, it may take them a little bit longer to finish their thoughts or complete a task. It is important that you give the person grace and wait with them through their tics to show genuine support.
- Ask respectful questions about their experience and how they would like to be treated when they are experiencing tics. Asking respectfully about their experience and diagnosis can help to show that you genuinely care about establishing a healthy relationship with them. For example, some people use humor to work through their symptoms and appreciate when others laugh along WITH them. However, always remember that you are laughing WITH them, and not ABOUT them.
- Meet the person where they are at the time. For example, if they are having a difficult day, ask to drive to the event instead of them driving, pick a quieter activity or place to go if that would be helpful to them, or simply ask if they need any help. They may not need or want any accommodations, but the fact that you check in and ask what they need at the time shows them respect.
- Do not make assumptions about their behavior. For example, do not assume that because they are sniffling that they have a cold and need a tissue.
- Give them space and privacy if that is what they want or prefer. Sometimes when someone is experiencing tics, they might need a quiet and private environment to help them regroup and get through their tic attack.
- Always provide a positive and supportive space for the person.
Tourette Syndrome can impact a person even when they are doing something they love, like Lewis Capaldi while performing at Glastonbury. When the crowd noticed that he was starting to struggle while singing and that his tics were making it extremely challenging to continue the song, they took over for him. The crowd collectively decided to use empathy and support. They sang the lyrics together, helping him finish the song through his tics. It was a perfect example of meeting people where they are in times of struggle.
Paul Stevens, who is featured in many documentaries about Tourette Syndrome, stated, “In that moment, those folks witnessed the challenges we face daily, not in a comedic way, no mocking, just empathy and supporting him”. Empathy, understanding, and meeting people where they are can make the difference from finishing a song, and stopping all together.
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