How stigma unfolds for patients with Functional Neurological Disorder

The aim of this study was to explore experiences of stigma in Functional Neurological Disorder (FND) from the perspective of the patient as it manifests from the onset of symptoms, up to diagnosis and subsequently. The existing literature clearly shows that stigma exists for many patients with FND, and is associated with poorer quality of life. However, it is less clear how stigma unfolds, and how it can be alleviated. We performed a qualitative interview study with patients who were diagnosed with FND, using data based on semi-structured interviews. Participants were recruited purposively via outpatient clinics. We analysed the data using a reflexive thematic analytic approach, through the lens of recognised stigma frameworks. 15 participants were included in the study, aged between 19 and 68 years, with varying presentations of FND. We identified six themes and 16 subthemes relevant to their stigma trajectory. We found that stigma unfolds through four main domains: 1) through their symptom experience; 2) through “othering” by the healthcare system; 3) through everyday interactions; and 4) from within the self. Across these four domains was a central theme of 5) stages of knowledge, which both fuelled and countered stigma. Lastly, 6) validation of the patient experience emerged as a theme that alleviated stigma. Stigma did not unfold as a linear process, rather it came from multiple interacting sources. Interventions to target stigma could take the form of improved clinician training, communication, especially around point of diagnosis, and public interventions, co-produced with patients with FND. •Patients with Functional Neurological Disorder experience stigma from many sources.•Work, family and online interactions contribute to stigma.•FND is often perceived as something unknown, fuelling experiences of being “othered”.•Self-stigma and anticipated stigma are common and can amplify distress and isolation.•Clinician behaviour can both create and alleviate stigma.