What is it like to receive a diagnosis of nonepileptic seizures?

Abstract

The aim of this qualitative study was to provide insight into the experience of receiving the diagnosis of nonepileptic seizures (NES) from the patient's perspective. Semistructured interviews were conducted with eight patients who had received the diagnosis of NES over the preceding 6 months. All participants were on a waiting list for psychological treatment. Verbatim records of the interviews were analyzed using interpretative phenomenological analysis (IPA). Six main themes emerged from the data ("the experience of living with nonepileptic seizures", "label and understanding", "being left in limbo land", "doubt and certainty", "feeling like a human being again", and "emotional impact of diagnosis"). An ability to integrate the diagnosis into a personal narrative was key to participants' acceptance of the diagnosis. The communication of the diagnosis left some participants feeling distressed. The results suggest that patients need more time and resources to understand the diagnosis and more support after they have received it.