TY - JOUR

T1 - An exploration of the experiences of self-disgust in people with epilepsy  

AU - Mayor, Rebecca

AU - Reuber, Markus

AU - Giga, Sabir

AU - Simpson, Jane

N1 - This is the author’s version of a work that was accepted for publication in Epilepsy and Behavior. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Epilepsy and Behavior, 126, 2022 DOI: 10.1016/j.yebeh.2021.108435

PY - 2022/1/31

Y1 - 2022/1/31

N2 - AimTo explore the experiences of self-disgust in people with epilepsy and their understandings about this.DesignA qualitative study informed by thematic analysis.MethodTen 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.ResultsThree 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.DiscussionThis 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.

AB - AimTo explore the experiences of self-disgust in people with epilepsy and their understandings about this.DesignA qualitative study informed by thematic analysis.MethodTen 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.ResultsThree 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.DiscussionThis 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.

KW - Epilepsy

KW - Emotions

KW - Disgust

KW - Self-disgust

KW - Qualitative

U2 - 10.1016/j.yebeh.2021.108435

DO - 10.1016/j.yebeh.2021.108435

M3 - Journal article

VL - 126

JO - Epilepsy and Behavior

JF - Epilepsy and Behavior

SN - 1525-5050

M1 - 108435

ER -