The landscape of uncertainty: living, healing and dying with epilepsy. Anthropological reflections

Abstract

To live with epilepsy is to inhabit a space of perpetual uncertainty—between seizures, between wellness and risk, between life and the threat of sudden death. This editorial reflects on two recent contributions to Epilepsy & Behaviour addressing SUDEP risk communication and the redefinition of healing in epilepsy. Drawing on anthropological and phenomenological perspectives, the article explores how epilepsy disrupts categories of time, agency, and identity, and how biomedical approaches often fail to grasp the moral and relational dimensions of such disruption. Concepts such as the “burden of normality,” liminality, and narrative healing are revisited, highlighting the inadequacy of a strictly pathological model of care. The editorial calls for a more symbolically aware and dialogical medical practice—one that acknowledges ambiguity, witnesses suffering, and remains present even in the absence of certainty. In doing so, it argues that true healing is not the eradication of risk, but the creation of a life that is liveable in spite of it.