Introduction: Functional neurological disorders (FND) are medical conditions that involve problems with the functioning of the nervous system. Functional movement disorders (FMD) are a subcategory of FND. Qualitative research in this area has been limited, meaning we have a limited understanding of the subjective experience of living with FMD. This research aimed to address this gap.
Method: Eight participants with FMD were interviewed using semi-structured interviews. Data was analysed using interpretative phenomenological analysis.
Results: Three superordinate themes and fourteen subordinate themes were identified. ‘Unexpected and progressive losses’: participants experienced many losses (e.g. bodily control, identity) as a result of having FMD. Their distress was compounded by a period of uncertainty whilst trying to get a diagnosis and unhelpful interactions with healthcare professionals. ‘False dawns’: participants had positive diagnosis experiences, although they felt a diagnosis did not change anything and they perceived treatment options to be unsuccessful. ‘Living with ‘it’’: participants still experienced a loss of control of the body. Some participants did not feel better and had not yet accepted living with FMD, whereas others felt better and had accepted living with FMD.
Discussion: The findings are consistent with qualitative research on other neurological disorders (Parkinson’s disease and multiple sclerosis) and medically unexplained conditions (chronic fatigue syndrome and non-epileptic seizures). Novel findings for the FMD evidence-base are: conceptualisation of identity, sense of separateness from body part(s) affected, experiences of self-blame, shame and embarrassment, fear of losing one’s mind, the belief of being judged negatively by others, working in a positive diagnostic framework and processes involved in acceptance. The findings may facilitate a more accurate understanding of patients’ experiences of FMD that could be used to inform healthcare, emphasising the importance of a timely diagnosis, developing a warm therapeutic relationship and suggesting the application of third-wave cognitive behavioural therapy approaches.
