Beyond the Tics: Experiences of Stigma and Psychosocial Impact in Tourette Syndrome

Abstract

Persistent tic disorders (PTD), including Tourette Syndrome (TS), impact individuals’ lives well beyond motor and vocal tics, affecting self-beliefs, relationships, and daily functioning. This qualitative study examined stigma and discrimination experienced by youth and adults with TS, their caregivers, and healthcare providers through in-depth interviews with 35 participants. Thematic analysis revealed four major themes: limited resources and funding, widespread misconceptions and stereotypes, negative experiences shaping self-perceptions and behaviors, and the importance of supportive environments in fostering resilience. Participants reported that widespread misunderstanding and exclusion led to significant psychosocial challenges, which were often more disruptive than the tics themselves. The findings highlight the need for clinical and behavioral interventions that address broader psychosocial issues, not just symptom management. Future research should explore resilience and protective factors that may help buffer against adverse experiences and improve psychosocial outcomes. This study was pre-registered at ClinicalTrials.gov (NCT05696769) and the Open Science Framework https://doi.org/10.17605/OSF.IO/EX52G.