Living with functional movement disorders: a tale of three battles. An interpretative phenomenological analysis

Abstract

Objectives: Functional movement disorders (FMD) have poor prognosis and high physical and psychological co-morbidity. Their pathogenesis remains unclear, clinicians often find them difficult to treat, and lack of agreement between healthcare providers and patients is common. This study aimed to explore the experiences of living with FMD to improve understanding of its impact and patients’ needs. Methods: Ten participants across the UK were recruited online through a charity’s social media platforms. Semi structured interviews were conducted via video calls and were audio recorded and verbatim transcripts were analysed using interpretative phenomenological analysis. Results: Three superordinate themes were generated from the data, representing the three battles fought by the participants: (1) intrapersonal: the tug of war with the secret agent within- the power struggle with symptoms; (2) interpersonal: navigating stigma and self-preservation; (3) systemic: pursuing hope and treatments against helplessness and passivity. Conclusions: Loss of control, feelings of powerlessness and oppression by symptoms is often mirrored in participants’ experiences of seeking healthcare and navigating societal stigma. Active efforts to regain influence, improve quality of life and maintain hope can be jeopardised by others’ dismissive attitudes and lack of knowledge. Antonovsky’s model of salutogenesis is proposed as a useful framework for facilitating empowerment in FMD service provision.