"How do I explain something I don't understand?": Young people's experiences of functional tics.

Abstract

Functional tics (FTs) are sudden, involuntary movements or vocalisations resembling those in Tourette Syndrome but thought to arise from functional neurological mechanisms. Since the COVID-19 pandemic, there has been a sharp rise in FT presentations around the world, particularly among young people (YPs), with research linking social media platforms like TikTok to this sudden increase. Despite this surge, the lived experiences of YPs with FTs remain underexplored. This study aimed to understand how YPs experience FTs and how these affect daily life, wellbeing, sense of self, help-seeking, and coping. Twelve UK-based YPs aged 13-24 were recruited through third-sector organisations and online platforms using purposive sampling. Semi-structured interviews explored onset, impact, and coping with FTs. Data were analysed using Reflexive Thematic Analysis (RTA). Four themes were identified: Life Upended (sudden disruption and emotional upheaval); Help that Hurts (invalidating or fragmented support driving reliance on online spaces); Under the Spotlight (impact of visibility on identity and wellbeing); and Coming to Terms (developing coping strategies and resilience over time). This study demonstrates how FTs reshape YP's lives, identities, and experiences of seeking support, highlighting the need for compassionate, contextually informed approaches across clinical and everyday environments.