Functional Tics: Towards an Understanding of Young People’s Lived Experiences

Background and Aims: Func&onal &cs (FTs) are sudden, involuntary movements and/or vocalisa&ons that resemble &cs such as those seen in Toure:e Syndrome but are thought to arise from func&onal neurological mechanisms. Since the COVID-19 pandemic, there has been a sharp and widely documented rise in FT presenta&ons across the world, par&cularly among young people, with research linking the influence of social media plaKorms like TikTok to the sudden and rapid rise of what was previously a rela&vely rare presenta&on. Despite this surge, the lived experiences of young people with FTs remain significantly underexplored. This study aimed to understand what it is like for young people to live with func&onal &cs and how they affect their daily lives, psychological wellbeing, sense of self, experiences of seeking support, and how they find ways to cope and adapt despite widespread misunderstanding and limited help. Method: Par&cipants were recruited through third-sector organisa&ons and online plaKorms using purposive sampling. Twelve young people aged 13–24 took part in semi-structured interviews, reflec&ng on the onset, impact, and ongoing effects of FTs. Reflexive Thema&c Analysis was used to analyse the data. Findings: Four themes were iden&fied from the data: Life Upended, which describes the sudden disrup&on and emo&onal upheaval caused by the onset of FTs; Help that Hurts, which explores experiences of seeking support across healthcare, educa&on, and interpersonal systems, and how unmet needs oXen pushed par&cipants toward online spaces or personal networks for understanding; Under the Spotlight, which captures the impact of sudden visibility on par&cipants’ psychosocial wellbeing and sense of iden&ty; and Coming to Terms, which explores the evolving, dynamic rela&onship between young people and their FTs, shaped by &me, psychological shiXs, prac&cal adapta&ons, new coping strategies, and resilience, amongst ongoing challenges. Conclusion: This study highlights the need for greater awareness of the lived experiences of young people with FTs, including what helps and what hinders their well-being. The findings highlight the importance of compassionate, containing communica&on from professionals and the detriments of dismissive or invalida&ng responses. They also point to the complexity of online spaces, which offer both risks and benefits, and how young people navigate them. This study provides insight into a poorly understood condi&on and invites more a:uned, context-sensi&ve approaches across both clinical and research contexts.