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Matthew Supa

Tourette Syndrome: Misconceptions and a Growing Awareness

Written by: Matthew Supa

Edited by: Jonathan Cina


The years leading up to Lewis Capaldi’s June 2023 performance at Glastonbury Festival had been a whirlwind for the singer (Savage, 2023). The internationally renowned recording artist, known for such chart-topping hits as “Someone You Loved” and “Before You Go” (Chart History, n.d.), had become popular in the preceding years, distinct in the “soulful delivery” of his tunes and the emotionally resonant themes which they conveyed (Browning, 2023). However, as the singer’s career blossomed, an obstacle that he had long attempted to ignore had now taken center stage within both his personal and professional life (Mier, 2023). As Capaldi explained himself, he had always experienced what he described as “involuntary twitches,” and began to notice his tics in “filmed interviews” he’d done “as early as 2018” (Mier, 2023). For a long time, he didn’t understand why these symptoms were happening. However, after taking a four-month break to focus on his mental health, Capaldi received the diagnosis: Tourette syndrome. In September of 2022, Capaldi made an announcement about his diagnosis to his fans, and he has since remained forthright with the public regarding the condition and how it impacts his life and his music (Mier, 2023).

The evening of June 24th, 2023 was supposed to be a triumphant moment for Capaldi (Savage, 2023). With his performance in Glastonbury set for that date, Capaldi had already announced his decision to take a few weeks off from live performances to “‘rest and recover’” in preparation for the show (Mier, 2023). Despite an initially successful start to the concert, that Saturday evening found Capaldi frustrated as the symptoms of Tourette syndrome made it increasingly difficult for him to continue with his performance (Restrepo, 2023). He would later state, “‘I’d hoped three weeks away would sort me out. But the truth is I’m still learning to adjust to the impact of my Tourette’s’” (Mier, 2023). Despite his singing voice becoming weaker, Capaldi persisted through the remainder of his set. In a touching moment, the thousands of fans in attendance that day helped the singer to complete “Someone You Loved,” not only “singing his lyrics” but also “chanting his name” in a remarkable display of encouragement (Restrepo, 2023).

While such a moving display is a positive sign regarding increased awareness and understanding of Tourette syndrome, it can also obscure a broader and still pervasive trend: a longstanding lack of knowledge regarding the condition and the common misconceptions about it which continue to persist. Even during the Instagram Live in which Capaldi announced his diagnosis, he saw his TikTok followers “writing comments like, ‘Why is he twitching?’,” even “questioning whether he was on drugs” (Mier, 2023). Despite progress that has been made, there are several misconceptions which continue to linger in the public consciousness regarding Tourette syndrome. It is important that those myths are not only discussed, but debunked, allowing for greater understanding of the condition within society more generally.

Put simply, Tourette syndrome is a neurodevelopmental disorder (Carroll, 2023). As explained by the Centers for Disease Control and Prevention, “Tourette Syndrome (TS) is a condition of the nervous system. TS causes people to have ‘tics,’” which it describes as “sudden twitches, movements, or sounds that people do repeatedly” and which they “cannot stop their body from doing” (Centers for Disease Control and Prevention, 2023). The types of tics which people experience as a result of the condition can vary; some experience motor tics, which are “movements of the body” that include “blinking, shrugging the shoulders, or jerking an arm,” while others may experience “vocal tics” like “humming, clearing the throat, or yelling out a word or phrase” (Centers for Disease Control and Prevention, 2023). Tics can also range from “simple” (involving “just a few parts of the body”) to “complex” tics which comprise more parts of the body and sometimes involve patterns, such as “bobbing the head while jerking an arm, and then jumping up” (Centers for Disease Control and Prevention, 2023). In those who face the condition, symptoms often start with motor tics beginning in childhood and can worsen as they get older. Diagnosis usually involves determining which types of tics an individual is experiencing and how long they have encountered them (Centers for Disease Control and Prevention, 2023).

While this was just a brief overview of the disorder on the most basic level there is much to know about the chronic condition. However, the facts have become clouded by widespread misunderstanding within society – and, often, as a result of such a lack of knowledge of the disorder, these facts have given way to harmful misconceptions and far-too-common prejudices targeted toward those with Tourette’s. For instance, as explained by the Tourette Association of America, one common myth is that everyone with Tourette syndrome experiences “uncontrollable vocal obscenities” – something which can often be found in the misguided depictions of Tourette’s in television and film (McNaught, 2016). This erroneous perception of Tourette’s has become so pervasive within society that, among far too many, Tourette’s has even been called the “cursing disorder” (McNaught, 2016). However, when it has been shown that only about 10% of people facing Tourette syndrome experience “the excessive and uncontrollable use of foul or obscene language” (officially called coprolalia), it becomes clear just how misguided the myth propagating the notion of Tourette’s as a “cursing disorder” truly is.

There are other harmful yet widely prevalent – misconceptions which exist surrounding Tourette syndrome. For example, it is often believed that if someone experiences tics, they must have Tourette syndrome (McNaught, 2016). This is simply false: as explained by the Tourette Association of America, there is a “spectrum” of tic conditions which can range from those with “simple, temporary tics” to “situations where there are multiple complex tics in one or more parts of the body and which can be permanent” (McNaught, 2016). Certain symptoms – such as the fact that “an individual must have a history of a number of motor tics,” with “at least” one “vocal tic, with tics being present on and off for more than a year” – are required in order for a Tourette’s diagnosis to be made specifically (McNaught, 2016). Another common belief is that anyone experiencing Tourette syndrome is facing mental illness (McNaught, 2016). Again, this is an unfounded notion; while Tourette’s “often occurs along with other psychiatric conditions,” it is, simply, “a movement disorder” (McNaught, 2016). While these are only a few of the many misconceptions which exist surrounding Tourette’s, all such notions only serve to discredit and invalidate the often already challenging symptoms which those living with the condition are experiencing. This can not only cause real harm to the mental health and self-image of those with the condition, but can also discourage those facing symptoms of Tourette’s from seeking treatment (Cox et al., 2019). 

Prior to Lewis Capaldi’s public discussion of the chronic condition, many of the fans in attendance at the Glastonbury show may not have even been aware of its existence. It has been found that, even in those who experience the effects of the disorder, many don’t know that those symptoms are a result of Tourette’s (Carroll, 2023). To that end, it is incredibly important to recognize how significant Capaldi’s impact in raising awareness for Tourette syndrome has been. Capaldi has himself embraced the part he’s played – as he has stated, “‘Now I’m the poster boy for Tourette’s, and I’ll accept that’” (Mier, 2023). While there is still much work to be done, the increasing number of people who are becoming aware of the realities of Tourette’s syndrome shows that there truly is hope for improvement in awareness and broader acceptance of those facing the condition.



References:

Browning, J. (2023, June 25). Fans help Lewis Capaldi finish song after he loses his voice 

Carroll, K. (2023, July 17). Lewis Capaldi’s Tourette’s Diagnosis Shines Light on the Disorder. 

Centers for Disease Control and Prevention. (2023, May 31). What is Tourette Syndrome?. 

Cox, J. H., Nahar, A., Termine, C., Agosti, M., Balottin, U., Seri, S., & Cavanna, A. E. (2019). 

Social stigma and self-perception in adolescents with tourette syndrome. Adolescent health, medicine and therapeutics, 10, 75–82. https://doi.org/10.2147/AHMT.S175765 

McNaught, K. (2016, May 19). Debunking Myths and Misconceptions. Tourette Association of 

Mier, T. (2023, June 27). Everything Lewis Capaldi Has Shared About His Struggle With 

Restrepo, M. L. (2023, June 26). Lewis Capaldi’s Tourette’s interrupted his performance. The 

Savage, M. (2023, June 24). Lewis Capaldi: Crowd offers support as he struggles to finish 

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