“A Quagmire Condition”: The (uncertain) experience of musicians affected by dystonia

Musician's dystonia (MD) causes a loss of motor control during music performance, with negative consequences on the musician's career. To date, no efficacious treatment has been identified. This qualitative study focuses on the experiences of musicians with MD, exploring the onset and progression of dystonia and the coping strategies that are employed. Thirty-one musicians diagnosed with MD were interviewed, and a reflexive thematic analysis was conducted. The analysis yielded two themes: "Dystonia…a labyrinth you don't understand how you got in and don't know how to move through" and "The kiss of death for a musician." The experience of musicians is characterized by pervasive uncertainty, stemming from the unpredictability and ambiguity of symptoms, the absence of clear prognoses, and the lack of effective treatments. This uncertainty is further compounded by the delegitimization from social and professional contexts, as well as from health professionals. MD has resulted in biographical destruction, but over time most participants manage to reconceptualize their identity. MD should be regarded as a work-related illness with the potential to result in work-related disability. To assist musicians in overcoming the challenges posed by MD, greater societal awareness and specific psychological and social support are necessary.