Revisiting thematisation in the narrative study of epilepsy

Abstract

Taking as its point of departure the set of categorised themes developed by Schneider and Conrad in Having Epilepsy: The Experience and Control of Illness, the article focuses analytic attention on the individual theorising that produces these themes-in-action. Utilising 'illness narratives' of individuals with an epilepsy, I suggest that in qualitative sociological investigations into the illness experience there has been a narrative detachment from the very artfulness that articulates these themes. While there certainly is an appreciation of the experiential categorisation that individuals do within their storytelling in this genre of research, it has nevertheless been underappreciated in a tendency to consolidate what is told into workable thematic categories. In essence, the difference of experience has been placed aside, in many ways dictating what is looked for in the analysis itself.

Problems in functioning from the patient perspective using the International Classification of Functioning, Disability and Health (ICF) as a reference

“…, 2004). Analogous to findings in epilepsy (Faircloth, 1999; Schneider and Conrad, 1981), we were able to distinguish typological behavior in social encounters and in disclosing or hiding the disorder, ranging from a secretive to a pragmatic type selectively concealing their disorder, to a quasi‐liberated type that naturally confronts others with their health condition.…”

“…Given the degrees of uncertainty after onset of symptoms (Lorence and Hummel, 2006), before and after diagnosis (Broughton and Broughton, 1994;Wilson et al, 2007), and the chronic nature of narcolepsy, this patient group seems to be overtly challenged to develop distinct strategies of coping with a disorder that is not directly visible in the interaction with the environment, but more evident through performance-related problems than other sleep disorders (Bayon et al, 2009;Schneider et al, 2004;Teixeira et al, 2004). Analogous to findings in epilepsy (Faircloth, 1999;Schneider and Conrad, 1981), we were able to distinguish typological behavior in social encounters and in disclosing or hiding the disorder, ranging from a secretive to a pragmatic type selectively concealing their disorder, to a quasi-liberated type that naturally confronts others with their health condition.…”

The illness experience: state of knowledge and perspectives for research

“…The disclosure of epilepsy might be made to ‘close friends’ and future spouses in carefully thought‐out and staged circumstances, such as during trips or long moments spent with friends. In his study on epilepsy, Faircloth (1999: 223) pointed this out while commenting on a narrative by Susan, who had a ‘plan of disclosure well‐articulated’. John, another case covered by Faircloth, pursued a selective strategy with his doctor by reporting not all of his seizures but only those he thought the doctor needed to know about.…”

Resisting medications: moral discourses and performances in illness narratives

“…Goffman’s notion of performance is reflected in studies demonstrating performance of illness in everyday life (Bury 1988, Faircloth 1999), and has been used to understand how people provide illness narratives in clinical settings, referred to by Mattingly (2004: 73–94) as ‘healing dramas’. Riessman (2003a, 2003b) used the theories of Bourdieu and Goffman to examine two contrasting performances of masculinity, situating these accounts within an interactional context in which the social structures of gender, class and disability could be seen to structure, and be reinvented in, accounts of the body and social space.…”