Tourette Syndrome: Lived Experience

At the end of Tourette Syndrome Awareness Month, we want to share perspectives from a member of the University of Minnesota’s MnTiC Patient Advisory Board (PAB) and clinical psychology Ph.D. candidate at Marquette University, Brandon Pitts (pictured), and provide information about a misunderstood condition as well as resources for treatment and support.

Tourette Syndrome (TS) is a neurodevelopmental condition, part of the spectrum of tic disorders, characterized by involuntary motor and vocal tics. Around 1% of people have TS, with varying degrees of tic severity, tic type, and impact on quality of life. Some people with TS experience additional emotional, behavioral and psychological challenges to wellbeing and functioning. There is no cure for TS, and although effective treatments exist, they don’t work for everyone.

Every person’s tics are unique and are an important part of who they are.

Describing Tics
Tics can occur at any time, often without warning, and individuals have very little control over when they appear. Tics can also be influenced by different situations, becoming more noticeable in moments of stress, excitement, anxiety, or even fatigue. This unpredictability can make everyday activities challenging, as the urge behind a tic can suddenly intensify. Brandon describes the sensation as "like an itch. If you don’t scratch it for a while, it eventually goes away, but the intense urge many times leads people to engage in a movement or a vocalization to get the urge to disappear," he said.

Brandon’s description highlights the physical and mental build-up that often comes with tics: the longer they are held back, the stronger the urge can become. For many people, releasing that urge through a movement or sound provides a brief sense of relief, even though the cycle may begin again soon after.

Tics at the beginning
To be considered part of TS, tics have to start before the age of 18. For Brandon, his diagnosis came in fourth grade, an experience that remains deeply etched in his memory. It began during a spelling test, a moment that should have been routine but quickly became overwhelming. “I just remember getting really, really frustrated, with going through the process of learning these words. I had no idea but my mom and dad just realized that I had TS. They had found it out a couple of days before,” said Brandon.

At the time, Brandon didn’t yet understand what he was experiencing or why it felt so difficult to control. It wasn’t until after an emotional and challenging conversation at home that things began to make sense. His mom took the time to explain what TS was, what it might look like for him, and how it could affect his daily life. Even with that explanation, processing the diagnosis was not immediate, it brought confusion, uncertainty, and a need to adjust to a new understanding of himself.

But learning about the diagnosis was only the beginning of Brandon’s journey. Within days, he was faced with the difficult task of helping others understand it as well. Standing in front of his classmates, he courageously explained what TS was and how it affected him, hoping to clear up confusion and reduce stigma before it could take hold. It was not an easy moment for someone so young, but it became an important step in shaping how his peers would see and support him moving forward.

While the diagnosis initially came as a shock to both Brandon and his family, it ultimately brought a sense of clarity. As Brandon reflects, “it just really helped to have a name for what I was going through.”

Misconceptions
One of the most common misunderstandings is that TS is defined by uncontrollable cursing. In reality, this symptom, known as coprolalia, affects only 10-15% of people with TS (although this number may be higher, as stigma related to coprolalia is thought to contribute to underreporting). Despite its rarity, coprolalia is often the most visible and dramatized aspect of TS in television, movies, and online content. As a result, people unfamiliar with the condition frequently assume that it is a universal experience for those living with TS. This narrow portrayal can lead to harmful assumptions and oversimplifications, reducing a complex neurological condition to a single, sensationalized symptom.

For many individuals with TS, this lack of knowledge creates a need to constantly explain or even defend their diagnosis. “It makes it so people sometimes have to justify having Tourette's,” Brandon says, reflecting on the conversations he has faced time and time again. People are often surprised when their expectations do not match reality, sometimes responding with comments like, “I’ve never heard you curse before.”

These kinds of interactions highlight the gap between public perception and lived experience. They also underscore the importance of education and awareness in breaking down stigma. Helping others understand that TS presents differently in every individual and that coprolalia, when it does happen, isn’t intentional or related to someone’s intelligence or character, are important ways to raise awareness.

Advocacy and Self-Care
Advocacy, Brandon explains, means “awareness”, specifically, “an increased awareness of the truth of what it is to have a tic disorder and live life with Tourette syndrome.” When reflecting on his childhood, Brandon recalls receiving only a surface-level understanding of TS, one that failed to capture the complexity of living with the condition. As he has grown older, however, his understanding has deepened: he now recognizes how differently TS can affect individuals and strives to share that broader perspective with others in a meaningful way. He is an integral part of the MnTiC PAB, providing crucial input and guidance on all aspects of the lab’s research.

Brandon also discusses the importance of self-care in managing his condition, describing a set of strategies he refers to as “distress tolerance.” He explains that “it helps with my stress, which also helps a lot with the tics which I have as well. There are multiple breathing techniques I use on a regular basis just to really try and help me calm down sometimes.” These practices allow him to regain a sense of control during moments of heightened tension or anxiety.

Many of Brandon’s tics involve strain in specific muscle groups, often leaving him with soreness and, at times, lingering pain. To address this, he incorporates relaxation techniques into his routine. “One of the skills I use is deep muscle relaxation, and the whole goal is to just try and get rid of the tension throughout my body,” he explains. Through these methods, Brandon demonstrates how intentional self-care and self-advocacy can serve as powerful tools, practical ways of supporting oneself and navigating the challenges of living with TS.

Barriers
Many barriers still remain for individuals with TS, particularly when it comes to accessing accurate information and appropriate treatment. Brandon highlights that one of the most significant challenges lies in the lack of awareness among healthcare providers and the general public. While he considers himself fortunate that his pediatrician had prior experience with TS, allowing for a clearer understanding of his symptoms and access to early psychoeducation, he recognizes that this level of informed care is not available to everyone.

In his current role working in a treatment setting, Brandon provides behavioral interventions for individuals with tic disorders. This position not only allows him to apply his professional expertise, but also to draw from his personal experience to better recognize symptoms that others might overlook. Reflecting on this, he explains, “I run into so many people where they did not get that knowledge there are treatments out there and even just a full definition of what TS is before coming in to see me.”

Raising awareness about how TS can affect daily life and ensuring that accurate information is shared with others are central to Brandon’s advocacy. He also emphasizes the importance of recognizing co-occurring conditions, as TS is often accompanied by additional diagnoses such as Attention-Deficit/Hyperactivity Disorder (ADHD). Research suggests that between 50–80% of individuals with TS also have ADHD, which can complicate diagnosis and treatment. In some cases, the presence of one condition may overshadow the other, delaying comprehensive care. Brandon reflects on his own experience, noting, “everyone was so focused on Tourette's that the ADHD kind of went under the radar for a long period of time.” Through his work and advocacy, he aims to address these gaps, promoting a more complete understanding of TS and the complexities that often accompany it.

Connection and Community
Brandon reflects that while there are certain tics he would prefer not to experience, many of them have played a meaningful role in shaping his identity and personal journey. He explains, “I have many tics that I associate with beautiful memories, stories, or the start of great friendships. Some of my closest friendships were strengthened by me sharing that I have Tourette Syndrome.” For Brandon, these experiences highlight how openness about his condition can foster connection, understanding, and community.

Research and hope for the future
Brandon highlights an important shift in how researchers and clinicians are beginning to understand TS, noting that the conversation is moving beyond simply measuring tic severity to considering tic impairment and overall impact. He explains, “Recently, there has been increased focus on the level of impairment individuals experience due to their tics and the extent to which specific tics affect their daily lives.” This evolving perspective reflects a more nuanced understanding of the condition, one that emphasizes how symptoms affect daily functioning rather than how noticeable they may appear.

He illustrates this distinction by pointing out that individuals with highly visible or frequent tics may not necessarily experience significant disruption in their daily lives, while others with milder tics can feel a much greater sense of difficulty or limitation. This contrast underscores the importance of evaluating TS through the lens of personal experience and perceived impact. As Brandon explains, “It is really important to address impairment more in future research, since impairment is often what leads individuals to seek treatment." His insight reinforces the need for continued research and clinical approaches that prioritize quality of life and ensure individuals feel supported in seeking care when it is most meaningful for them.

A final note
The way tics present can vary widely from person to person, often defying common stereotypes or assumptions. For this reason, Brandon encourages greater openness and curiosity, noting that preconceived notions about TS can be limiting. He would “encourage you to have an open mind and to listen to the experiences of other people because they can be a lot of things.” By lifting up lived experiences and broadening understanding, Brandon hopes to challenge misconceptions and foster a more inclusive perspective on TS.

For those interested in learning more, valuable resources include the Minnesota Tic and Compulsivity Lab, the Tourette Association of America (TAA), and the MnTiC Patient Advisory Board, of which Brandon is a member. They all provide education, research insights, and opportunities for community engagement.