Narratives of Living with Epilepsy Diagnosed in Adulthood

Abstract

Background and aims: The individual’s experience of living with epilepsy is often neglected with the dominant focus being upon seizure control. However, the experience of living with epilepsy is more than the seizures. Epilepsy is an illness that is understood in many different ways and the narratives the person draws from will impact their own understanding, experience and management of the condition. Based upon this gap in the literature this study sought to hear the narratives of people diagnosed with epilepsy in adulthood as told to an outsider with the hope of developing understanding, informing clinical practice and improving support for people diagnosed with epilepsy in adulthood. Methodology: A qualitative approach was chosen for this project. A purposive sample of eight individuals diagnosed with epilepsy in adulthood was recruited. Individual interviews were conducted, audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts with a focus upon both what was spoken about and how it was told. Analysis and findings: Each participant is introduced individually, presenting a ‘global impression’ of their narrative. This is followed by a consideration of the similarities and differences across all participants under the shared plots of stories of: onset; changes and challenges; and meanings of epilepsy. Within the shared plot of stories of onset are the storylines of ‘affirmation’ of self; ‘continuation’ of self; biographical disruption and searching for a cause. Within the changes and challenges shared plot there are storylines of: dependency; emotional expression; ‘I try to think positively’ and ‘It’s like talking about someone else.’ Within the final shared plot of meanings of epilepsy there are storylines of: something ‘normal’; something ‘all a bit scary’; something ‘people used to get locked up for’; a ‘hidden illness’ and ‘it’s not to be spoken about.’ The narratives show that having epilepsy is a journey that has different effects on people at different times of their lives and in different contexts. The findings are discussed in relation to clinical implications; strengths and limitations of the methodology and directions for future research.