People with Tourette syndrome, like Billie Eilish

Tourette syndrome is a neurological condition that causes tics, which are repeated, involuntary movements or sounds a person cannot always control. These tics vary widely among individuals and can change over time. For example, someone might blink repeatedly, shrug their shoulders, or make throat-clearing sounds. Tics are not voluntary actions, meaning the person does not choose to perform them. The condition affects less than 1% of children worldwide, though estimates vary by study and population. Tourette syndrome often coexists with other challenges such as attention problems, anxiety, or obsessive-compulsive behaviors. These additional symptoms can significantly impact a person’s daily life, sometimes more than the tics themselves. For instance, a child might face teasing for involuntary blinking but struggle more with untreated anxiety or difficulty focusing in class.

People with Tourette syndrome can temporarily suppress their tics, such as during a public interview, but this does not mean the tics are voluntary or that the diagnosis is fake. Suppression requires intense concentration and is often exhausting. For example, singer Billie Eilish described suppressing her tics as using 'everything in (her) power' to do so during interviews. Suppression can be a hallmark of Tourette syndrome and is even a key part of modern treatment. However, suppressing tics for long periods often leads to a later release of tics, sometimes in a more intense 'storm' once the person is in a safe, private space. This fluctuation in tic severity is a defining characteristic of Tourette syndrome and can lead others to question the diagnosis.

Tourette syndrome is frequently misunderstood, leading to skepticism about its legitimacy. When Billie Eilish publicly shared her diagnosis in 2019, some internet commentators questioned whether her tics were real, pointing to times when she appeared tic-free in interviews or performances. This skepticism stems from a lack of awareness about tic suppression and the dynamic nature of Tourette syndrome. Symptoms can wax and wane, influenced by factors like stress, sleep deprivation, or illness. Many people experience fewer visible tics while focused on activities like music or sports but have more tics after returning home. This variability can make the condition seem inconsistent to outside observers.

Tourette syndrome exists on a spectrum, meaning no two people experience it the same way. Tics can be simple or complex. Simple tics involve brief, isolated movements like blinking or shoulder shrugging, while complex tics involve multiple muscle groups or elaborate sequences of actions. Vocal tics range from throat clearing to repeating words or sounds. Some people also develop rituals or repetitive behaviors that overlap with obsessive-compulsive symptoms, making it hard to distinguish where a tic ends and an obsessive behavior begins. Tics are dynamic and influenced by stress, sleep deprivation, and illness. For example, many people report a dramatic increase in tics after returning home from school or work, where they can finally stop suppressing them.

Despite the challenges, tic suppression can be strengthened and used therapeutically. Since 2019, the American Academy of Neurology has recommended behavioral intervention as an evidence-based treatment for Tourette syndrome. One such method is comprehensive behavioral intervention for tics (CBIT), which teaches people to recognize early warning sensations before a tic, understand situations that trigger tics, and develop competing responses to reduce tic frequency. For instance, someone feeling a throat sensation before a tic might learn to breathe slowly through the nose while keeping the mouth closed, making it harder to perform the tic. Large clinical trials have shown that CBIT significantly reduces tic severity for many children and adults. Other treatments include medication, behavioral therapy, and, in rare cases, a surgical therapy called deep brain stimulation.