Objective: Despite its significant impact on communication and quality of life, the experience of living with laryngeal dystonia (LD) remains under-researched. To address this gap, this study analysed first-hand narratives shared on YouTube, offering unique insights into the personal and psychosocial dimensions of having LD.

Methods: This study utilised a qualitative description design to analyse publicly available YouTube videos to explore experiences of adults living with LD. Videos were identified using targeted search strings and snowballing. Video transcripts were coded and analysed via reflexive thematic analysis, with peer examination and collaboration employed for rigour.

Results: Eighty-six videos from 58 different adults were included. Analysis of results generated six themes with 19 sub-themes. These themes encompassed: (1) diagnosis challenges; (2) the impact on communication across environments; (3) identity adjustments and emotional impacts; (4) social stigma and perception; (5) the importance of support and advocacy; and (6) treatment as both a lifeline and a limitation.

Conclusion: This study provided comprehensive insight into the lived experience of individuals with LD. The findings may inform future practice as they highlight the importance of implementing person-family-centered approaches and holistic assessment and management, as well as the involvement of peer support for adults with LD.