Epilepsy and identity: a linguistic analysis of seizure label semantics

Abstract

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.