“This is real”, “this is hard” and “I’m not making it up”: Experience of diagnosis and living with non-epileptic attack disorder

•The understanding of non-epileptic attack disorder is progressing.•This understanding can influence the patient experience of non-epileptic attacks and disorder management across the disorder trajectory.•This research suggests the consistent, timely implementation of a rule-in diagnostic approach and multi-disciplinary management.•Education for healthcare professionals and professional led peer support groups are recommended. To use a qualitative research approach to explore adults’ experience of living with non-epileptic attack disorder. The objective was to explore the experience of adults (18 years+) with a confirmed diagnosis of non-epileptic attack disorder (NEAD) across the trajectory of the disorder. The topics investigated included the onset of symptoms, the experience of non-epileptic attacks, the diagnostic process and living with NEAD. Twelve people diagnosed with NEAD who attended a tertiary hospital neurology department took part in semi-structured interviews. The data generated were analysed using reflexive thematic analysis. Eleven women and one man with median age of 25 years took part. Three themes were developed: mind–body (dis)connect, a stigmatised diagnosis and a role for containment. Adults spoke about their experience of nonepileptic attacks, the diagnostic and management process and the impact of both nonepileptic attacks and the NEAD diagnosis on their lives. Adults’ experience’s within the healthcare system across the trajectory of NEAD influenced their own understanding and trust in their NEAD experience, how they shared this with others in their social and work lives and how they managed their NEAD symptoms on a daily basis. The research suggests the need for a consistent, timely implementation of a rule-in diagnostic approach and multi-disciplinary management of NEAD. It is recommended that lessons be taken from theoretical models including the common-sense model and a modified version of the reattribution model to support the de-stigmatisation of this diagnosis to inform psychoeducation and professionally facilitated peer-support groups.