Type JournalArticle
Date 2009
Volume 50
Number 5
Tags person-first language
Journal Epilepsia
Pages 1280--1283

Stop saying epileptic

Abstract

The purpose of this study was to evaluate the impact upon attitude and perceived stigma of using different terms for referring to persons with epilepsy among teenagers. High school students received one of two versions of a brief questionnaire and of the Stigma Scale of Epilepsy (SSE). The versions differed only in the term used: “people with epilepsy” (PWE) in the group-1 (N = 109) and “epileptics” in group-2 (N = 105). Group-1 responded that 62% of PWE and group-2, that 93% of epileptics have more difficulty finding employment. Group-1 responded that 37% of PWE and group-2, that 70% of epileptics have more difficulties at school. Group-1 responded that 41% of PWE and group-2, that 87% of epileptics are rejected by the society. None of individuals in group-1 indicated that they were prejudiced toward PWE, whereas 3% of group-2 indicated that they were prejudiced toward epileptics. The SSE score (range from 0 to 100, higher the score, higher the degree of perceived stigma) was 49 [confidence interval (CI) = 46.9–52.0] for group-2 and 45 (CI = 42.4–48.2) for group-1 (p = 0.03). In conclusion, the words we use can influence our perceptions and have consequences in terms of social stigma associated with epilepsy. We should refrain from using the term “epileptic” to refer to a person with epilepsy, and consider the importance of our choice of words as part of the effort to bring epilepsy out of the shadows.

Name Role
Nelson F. De Barros Author
Paula T. Fernandes Author