Navigating the social world with neck dystonia: An Interpretative Phenomenological Analysis

Neck dystonia is a neurological condition, characterised by involuntary movements of the neck muscles, causing twisted head positions and often pain and head tremor. Ten participants with neck dystonia were interviewed and the data was analysed using an Interpretative Phenomenological Analysis approach. Three themes were constructed: (1) dismissed by others for having an unfamiliar condition; (2) negotiating a new social identity; and (3) managing the stigma of a visible condition. It is proposed that psychological support could benefit people with neck dystonia who experience difficulties arising from identity management and stigma. Systemic interventions, such as education campaigns, are also proposed to help address stigmatising attitudes.