What is it like to live with a functional movement disorder? An interpretative phenomenological analysis of illness experiences from symptom onset to post-diagnosis

OBJECTIVES With few empirically supported treatments, functional movement disorders (FMD) can be challenging to manage. To enable service providers to better support people with FMD, this study sought to understand the lived experience of FMD: to gain insight into how individuals make sense of their experience from symptom onset through medical evaluation and diagnosis to post-diagnostic adaptation. DESIGN An interpretative phenomenological analysis (IPA) of patient accounts of living with FMD. METHODS Eight participants were recruited from a UK teaching hospital adult neurology service: seven females, varying in age (20s-70s), FMD symptom type (tremor, dystonia, and tics), and time to diagnosis (10 - 192 months). Semi-structured interviews facilitated participant accounts of key events. Interviews lasted 75-125 minutes and were transcribed verbatim. RESULTS Three super-ordinate themes were apparent. The first covered the experiences of onset ('Something is wrong with me'), including loss of control - with the affected body part often described as a separate entity - threats to identity and disturbance in relationships. 'At last! What now?' outlined the bittersweet experience of diagnosis and of treatments. Third, 'Living my life with it' incorporated ongoing experiences of coping with symptoms. While some continued to struggle with the emotional impact of symptoms, others developed a compassionate relationship with their self and maintained satisfying activities. CONCLUSIONS FMD has a significant impact on patients' relationships with themselves and others, which in turn affects well-being. These findings suggest some nuanced additions to interventions (diagnosis, psychotherapy, physiotherapy, public education.).