An exploration of the experiences of self-disgust in people with epilepsy

Mayor, Rebecca and Reuber, Markus and Giga, Sabir and Simpson, Jane (2022) An exploration of the experiences of self-disgust in people with epilepsy. Epilepsy and Behavior, 126: 108435. ISSN 1525-5050

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Abstract

Aim To explore the experiences of self-disgust in people with epilepsy and their understandings about this. Design A qualitative study informed by thematic analysis. Method Ten adults (out of 43 individuals initially interested in taking part, with 38 of those with levels of self-disgust categorised as high) with epilepsy and uncontrolled seizures were recruited online and participated in a telephone semi-structured interview. Results Three themes illustrated the development and experiences of self-disgust in adults with epilepsy and uncontrolled seizures, and how participants attempted to manage this. The first theme described the development of self-disgust as a result of the physical manifestations of seizures but also the experiences of others’ disgust reactions to seizures and an expectation of rejection. The second theme described the enduring and often unescapable experiences of self-disgust, with the final theme illustrating how participants attempted to manage experiences of self-disgust, particularly through avoidance. Discussion This study was the first to explore qualitatively the experiences of self-disgust in people with epilepsy. People with epilepsy experience disgust in reaction to the physical symptoms of seizures and these disgust-based feelings appeared to become internalized following others’ disgust reactions. Avoidance as a strategy to manage self-disgust could be protective but might have inadvertently maintained feelings of self-disgust.