‘They Hear “Psychogenic” and Think, “Oh, You’re Making it Up”’: A Qualitative Study of Stigma and Lived Experience in People with Psychogenic Non-Epileptic Seizures

Abstract

Psychogenic Non-Epileptic Seizures (PNES) are episodes resembling epileptic seizures but without the neurological abnormality’s characteristic of epilepsy.  Individuals with PNES (PwPNES) live with unpredictable and disruptive symptoms, yet because the condition is poorly understood and often misrecognised, they are frequently disbelieved, invalidated, and accused of feigning illness in both healthcare and social contexts. This qualitative study explores the lived experiences of PwPNES, with a particular focus on how they encounter societal attitudes and stigma, and the implications of these experiences for their daily life and wellbeing. A sample of six adults (2 male, 4 female) with PNES took part in online, semi-structured interviews exploring their lived experiences, with a particular focus on stigma. Qualitative data were analysed using Braun and Clarke’s Reflexive Thematic Analysis, revealing seven interconnected themes. A prominent and deeply distressing theme was participants’ experiences of having their condition invalidated or regarded as “all in the mind” highlighting widespread trivialisation and scepticism.  Collectively, thematic findings revealed pervasive stigma and misunderstanding from friends and family, healthcare professionals, and broader society, which contributed to isolation, frustration, delayed access to care, and suboptimal healthcare experiences. Concurrently, themes of resilience, community support, and adaptive coping strategies emerged as important protective factors, highlighting how PwPNES navigate and mitigate the impact of stigma and its associated challenges. Taken together, the findings of this study highlight the urgent need for greater awareness, education, and improved diagnostic procedures to support PwPNES, while advancing understanding of their lived experience. Efforts should address both neurobiological and psychological aspects of the condition, promote compassionate, patient-centred care, and strengthen social support, with important implications for clinical practice, policy, education, and future research.