“Look for glimmers instead of triggers”: An exploration into the lived experiences of Functional Neurological Disorder using Interpretative Phenomenological Analysis

Functional Neurological Disorder (FND) is a prevalent, stigmatised and costly condition that has a significant impact on quality of life. Listening to the narratives of FND patients has been identified as crucial in developing an understanding of the disorder, yet few studies have addressed this and accounts have historically been neglected or misinterpreted. The current study aimed to explore the lived experiences of individuals diagnosed with FND. The research employed a qualitative design, using online one-to-one semi structured interviews analysed through Interpretative Phenomenological Analysis. Participants (n=12) diagnosed with FND were recruited via the social media of relevant charities in the United Kingdom. Three Group Experiential Themes and eight corresponding Personal Experimental Themes are reported: (1) a battle fought alone: (1a) bereft of care (1b) Physical and psychological isolation; (2) Interpersonal conundrums: (2a) Stigma from all directions (2b) A family affair (2c) Connecting with the ingroup; (3) Thriving through adversity: (3a) Moving through fear to grieving then acceptance (3b) Fostering hope and self-discovery (3c) Finding meaning and purpose. Life with FND was a lonely experience, with limited professional support and physical / psychological isolation. Participants faced interpersonal challenges, with stigma and role changes common. Experiences of peer support were mixed. Strategies employed to manage included shifting from grieving to acceptance, developing self-insight and rediscovering purpose. Participants called for greater investment in FND to achieve parity of esteem with other neurological conditions. The study provides insight into the experience of living with FND, including the challenges and management strategies.