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

Area of Science:

• Neurology
• Psychiatry
• Public Health

Background:

• Functional tics (FTs) are involuntary movements/vocalizations linked to functional neurological mechanisms.
• A global rise in FT presentations among young people (YPs) observed post-COVID-19 pandemic.
• Social media platforms implicated in the increase of FTs among YPs.

Purpose of the Study:

• To explore the lived experiences of young people with functional tics.
• To understand the impact of FTs on daily life, wellbeing, and self-perception.
• To investigate help-seeking behaviors and coping mechanisms in YPs with FTs.

Main Methods:

• Recruited 12 UK-based YPs (aged 13-24) via third-sector organizations and online platforms.
• Conducted semi-structured interviews focusing on FT onset, impact, and coping strategies.
• Utilized Reflexive Thematic Analysis (RTA) for data analysis.

Main Results:

• Identified four key themes: 'Life Upended' (disruption/upheaval), 'Help that Hurts' (invalidating support), 'Under the Spotlight' (visibility/identity impact), and 'Coming to Terms' (resilience building).
• FTs significantly disrupt YPs' lives, leading to emotional distress.
• Fragmented or invalidating support experiences drive reliance on online communities.

Conclusions:

• Functional tics profoundly reshape young people's lives, identities, and support-seeking journeys.
• Highlights the need for empathetic and contextually aware care in clinical and social settings.
• Emphasizes the importance of developing resilience and effective coping strategies for YPs with FTs.