Epilepsy, identity, and the experience of the body

Stephanie Kılınç, Carol Campbell, Alison Guy, Anna Van Wersch

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.
Original languageEnglish
Pages (from-to)42-47
Number of pages6
JournalEpilepsy and Behavior
Volume89
DOIs
Publication statusPublished - 1 Dec 2018

Fingerprint

Epilepsy
Post-Traumatic Epilepsy
Seizures
Interviews
Research

Cite this

Kılınç, Stephanie ; Campbell, Carol ; Guy, Alison ; Van Wersch, Anna. / Epilepsy, identity, and the experience of the body. In: Epilepsy and Behavior. 2018 ; Vol. 89. pp. 42-47.
@article{958c0c23316546c6995d0f2f5931cd2f,
title = "Epilepsy, identity, and the experience of the body",
abstract = "Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.",
author = "Stephanie Kılın{\cc} and Carol Campbell and Alison Guy and {Van Wersch}, Anna",
year = "2018",
month = "12",
day = "1",
doi = "10.1016/j.yebeh.2018.10.003",
language = "English",
volume = "89",
pages = "42--47",
journal = "Epilepsy and Behavior",
issn = "1525-5050",
publisher = "Academic Press Inc.",

}

Epilepsy, identity, and the experience of the body. / Kılınç, Stephanie; Campbell, Carol; Guy, Alison; Van Wersch, Anna.

In: Epilepsy and Behavior, Vol. 89, 01.12.2018, p. 42-47.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Epilepsy, identity, and the experience of the body

AU - Kılınç, Stephanie

AU - Campbell, Carol

AU - Guy, Alison

AU - Van Wersch, Anna

PY - 2018/12/1

Y1 - 2018/12/1

N2 - Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.

AB - Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.

U2 - 10.1016/j.yebeh.2018.10.003

DO - 10.1016/j.yebeh.2018.10.003

M3 - Article

VL - 89

SP - 42

EP - 47

JO - Epilepsy and Behavior

JF - Epilepsy and Behavior

SN - 1525-5050

ER -