Living with epilepsy : exploring the issue of stigma and the illness experience in everyday life

Abstract

This qualitative study explores the illness experiences of individuals who have epilepsy, and seek to understand whether, as a result of their condition, they have experienced any form of social stigma. In an attempt to understand the illness experience, the research focuses on the main social factors that determine the kind of experience the individual encounters. A qualitative research method was used to gather data from eleven participants. In order to provide in-depth insight and understanding of the illness experience, semi-structured interviews were carried out to explore the subjective experience of each participant. In spite of the subjectivity of the illness experience, all participants shared similar characteristics in their encounters. Findings show that the participants’ quality of life changed once they were diagnosed with epilepsy. As a result of the adaptation needed to deal with the chronic illness, the participants also state that their sense of self changed. Family ties, friends and members in society are also affected by the participants' condition. Data shows that participants living with epilepsy live in constant fear of present and future encounters. Also, all participants shared their encounters of epilepsy-related stigma. Stigma is seen as a manifestation of labelling and discrimination towards chronically ill individuals, which in return diminishes the participants’ sense of self worth. Participants state that the cause of stigma is a result of society not being educated about epilepsy, hindering them in terms of employment, education and relationships with others.