'I Have Had to Stop Singing Because I Can't Take the Pain': Experiences of Voice, Ability, and Loss in Singers With Hypermobility Spectrum Disorders.

Abstract

This study explored the voice experience, singing ability, and wellbeing of singers diagnosed with Hypermobility Spectrum Disorder (HSD) or hypermobile Ehlers-Danlos Syndrome (h-EDS). This was a mixed-method study. A purposive sampling strategy was used.Data were collected via an online survey, using written closed and open-ended questions. 276 adults completed the survey.This study focuses on a subset of professionally-trained singers (n=71). Responses elicited information about participants' voice health and function, symptoms of hypermobility, singing experiences and training. Data were analysed using template analysis. Many participants reported wide vocal ranges and enjoyment of singing but 74.6% of participants across all age groups (18-60 years) experienced voice difficulties. Three common themes were identified: (1) 'My unreliable voice': The ups and downs; (2) Wider effects of HSD/h-EDS on singers, and (3) Need for acknowledgment and support. Voice difficulties and hypermobility-related health conditions affected the participants' abilities to sing and perform; this impacted their professional and personal opportunities, communication, relationships, and wellbeing. Our results indicate that symptoms of voice disorder worsen over time. We suggest practical strategies that singers and training providers could implement to support hypermobile singers. More research is needed to fully understand voice difficulties in singers with HSD/H-EDS and to inform tuition and support.