The concepts of felt and enacted stigma (Scambler and Hopkins, 1986(1)) are well established
in epilepsy research. However, more recent research tends to focus on either those
doing the stigmatising or utilises quantitative methodologies, exploring daily occurrences
of stigma for those with epilepsy. The current study aims to explore the concept of
felt stigma in today's society, arguing that a return to a phenomenological approach
would allow people with epilepsy to discuss issues of importance to them, seeing them
as the experts on this concept (Byrne, 2001(17)).
Fifty-two people with epilepsy were recruited via an advertisement on the Epilepsy
Action website, thirty of whom took part in a follow-up interview. The interviews
were analysed following Lemon and Taylor's (1997)(22) phenomenological approach.
Three themes emerged, surrounding issues of embarrassment of having the condition,
non-disclosure of the diagnosis and misconceptions of the condition. These findings
support previous research which argues that people with epilepsy perceive a stigma
due to feeling different from the rest of society, meaning that they conceal their
condition as a way of managing such stigma and thus need to renegotiate their social
identity. Additionally, the moderating role of education in increasing knowledge of
epilepsy, with a view to reducing felt stigma, was evident.
The findings indicated a need to promote epilepsy awareness programmes as a means
of increasing public knowledge of epilepsy, with the aim of reducing felt stigma.