Abstract

PURPOSE: Functional cognitive disorder (FCD) is an increasingly recognised condition which causes significant disability and distress. While it is known to be associated with depression, anxiety and reduced functioning, like other functional neurological disorders it may be marred by stigma. To date, little is known about the lived experience of those with FCD. MATERIALS & METHODS: As part of a randomised controlled feasibility trial of online group Acceptance and Commitment Therapy (ACT) for FCD we conducted in-depth qualitative interviews and utilised a thematic analysis approach to explore the challenges of living with FCD; how individuals cope with the symptoms; and their experiences of healthcare services. RESULTS: We recruited six women and three men, with a median age of 54. They described living with FCD which included experiences of loss of identity, altered role, feelings of confusion, frustration and low self-esteem, stigma, social isolation, and dismissal by healthcare services. Nevertheless, suffers strove to find strategies to ameliorate their symptoms. CONCLUSIONS: FCD is a common and disabling condition which like other functional neurological symptoms leads to altered sense of self and unsatisfactory interactions with others, including healthcare professionals. The diagnosis should be made on positive grounds, clearly explained, and potential therapies investigated.