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.