“They’re intertwined really… they make each other worse”: An interpretative phenomenological analysis of living with epilepsy in the context of homelessness

Abstract

People experiencing homelessness, or "unhoused people", are eight times more likely to have a diagnosis of epilepsy compared to the general population. However, little is known about how epilepsy is experienced and understood within the context of homelessness. This study used Interpretative Phenomenological Analysis to explore the lived experience of epilepsy among six unhoused men in Ireland. Four group experiential themes were developed: Diagnosis as an Explanation with No Way Out, Dual Loss of Autonomy, Public Seizures and Social Devaluation, and Living Within Constrained Survival Pathways. Findings illustrate a dynamically reinforcing relationship between epilepsy and homelessness. Seizures undermined bodily reliability, while environmental instability associated with homelessness intensified unpredictability in managing safety and medical needs. This dual vulnerability meant participants navigated simultaneous bodily and environmental threats. The absence of private space made seizures public incidents, creating a double bind in which individuals depended on visibility and bystanders for assistance, yet were exposed to stigma and misrecognition. Services were often experienced as fragmented and cyclical, disrupting recovery and requiring individuals to prioritise survival over health through harmful trade-offs. Repeated exposure to these conditions contributed to a gradual erosion of agency and ongoing reconstruction of identity. These findings suggest that the burden of epilepsy in homelessness is compounding, with each condition significantly exacerbating the impact of the other. Epilepsy care for unhoused people should therefore incorporate trauma-informed approaches that address psychosocial needs and peer support, reduce stigma, improve staff awareness, and support integrated inclusion health pathways.