Experiences of living with epilepsy

Abstract

Approximately 50 million people worldwide and one in every 100 South Africans, live with epilepsy. The challenges of epilepsy are not limited to the physical manifestations of the disease i.e. seizures. Public perceptions of epilepsy contribute significantly to an individual’s experience of living with epilepsy. Stigmatisation of epilepsy occurs worldwide and presents in varying forms. Enacted stigma refers to overt acts of discrimination against people with epilepsy and perceived (or “felt”) stigma is the feeling of shame and fear of being stigmatised as a person with epilepsy. Epilepsy stigma is considered to be one of the most important factors that have a negative influence on people with epilepsy. There is a noticeable difference in the nature of epilepsy stigma between developed and developing countries, and even between communities within the same country. This difference suggests that epilepsy stigma is shaped by differences in education, cultural values, access to healthcare, quality of care and legal rules. There is very little research on epilepsy-associated stigma emerging from South Africa. The aim of this study is to describe the lived experience of living with epilepsy and the associated stigma. Following qualitative methods, using an ethnographic approach, 10 semi-structured interviews with people with epilepsy were conducted. The complexity of studying the subjective experience of stigmatisation lends itself well to this approach. Participants were identified through the Western Cape branch of Epilepsy South Africa and recruited from various communities in Cape Town, South Africa. Data was analysed using Braun and Clarke’s (2006) principles of thematic analysis. The participants reported a broad range of subjective experiences and perspectives of living with epilepsy. Across all participants, the factors which played an impactful role on their lives was the social support they received, the public understanding of the community they lived in, the daily reminders of being “different” and living with the fear of not knowing when the next seizure will occur. By nature of this study’s design, the findings from this study cannot be generalised to South Africa. However, this study offers a glimpse into the subjective experience of living with epilepsy from individuals residing in different communities in Cape Town, South Africa. The findings show a broad range of experiences which are mediated by external influences. The findings suggest a need for further research into the challenges people with epilepsy face across communities within South Africa.