Epilepsy and identity: a linguistic analysis of seizure label semantics

ABSTRACT

Background: The stigma of epilepsy still holds fast today, and consequently results in people with epilepsy not seeking the support they require. To date, little research has been conducted into seizure label preferences. This paper contributes new findings to this growing body of research.

Methods: Participants with epilepsy completed an online survey stating their preferences for seizure labels: seizure; fit; attack; episode; s/he is having a seizure/fit; and s/he is fitting/seizing. Through a thematic linguistic analysis of the participants’ comments, this paper investigates the influence of semantics and grammatical variation to assess how these linguistic features portray epilepsy. The semantic implications of individuals’ personal seizure labels are also explored.

Results: The consensus falls with seizure and s/he is having a seizure, as the alternative choices were comparatively less popular and illustrated many negative connotations. The participants’ explanations their ‘least preferable’ rankings were categorized and thematically aligned. This proposed taxonomy offers insight into how different labels shape identity and contribute to the stigma. The grammatical variations of the phrases appear to contribute to (mis)representing seizure trajectory and imagery. The personalized seizure labels offered by a selection of participants may also be suggestive of the seizure experience itself.

Conclusions: The consensus of these results can guide healthcare professionals and the media to opt, in the first instance, for the terms/ phrases that have been thought as the most preferable, and to avoid using those ranked by the majority as least preferable.

KEYWORDS:

• Applied linguistics
• epilepsy
• health communication
• stereotyping
• stigma
• identity

Acknowledgements

I would like to thank Epilepsy Action for promoting the survey on their website. I would also like to thank my anonymous reviewers for their constructive feedback on this paper.

Ethical approval

This research was conducted with the formal approval of the University of Nottingham’s Faculty of Arts Ethics Committee. All research reported in this paper has been conducted in an ethical and responsible manner and is in full compliance with the University of Nottingham’s ethics code of practice.

Disclosure statement

No potential conflict of interest was reported by the author.

Data availability statement

The quantitative data that support the findings of this study are available within the article itself. The qualitative data that support the findings of this study are available on request from the corresponding author, Jennifer Sanchez-Davies. The data are not publicly available due to restrictions due to their containing personal health-related information.

Notes on contributor

Dr Jennifer Sanchez-Davies’ research interests lie in health communication, language and epilepsy, corpus linguistics, and cognitive stylistics. She is particularly interested in using linguistic analysis to decode first-person narratives of experiential and subjective descriptions of different health conditions.