Epilepsy stigma: What do we know and where next?

Stigma is a major issue for people who develop epilepsy. Reducing stigma is a major focus of activity for the epilepsy patient support groups globally. In this paper, we introduce some key ideas and debates about the nature of and drivers for the stigma of epilepsy, including recent arguments about the need to frame analyses of the nature of epilepsy stigma within sociological debates about conflict and power. We then consider the role of the legislative process for redressing power imbalances that promote or maintain epilepsy stigma; and the value of tailored educational campaigns and programmes directed at stigma reduction. Finally, we consider the nature of ‘difference’ as experienced by people with epilepsy and how that difference translates into stigma; and provide evidence from a specific targeted intervention to combat epilepsy stigma that its reduction is an achievable goal.

Research Highlights
► The concept of stigma remains important for understanding the global social reality of epilepsy.
► Stigma reduction efforts must be theoretically and culturally informed.
► Anti-stigma campaigns require support through statute and legal process.
► Patients' stories of epilepsy provide ways of understanding the associated stigma.
► Use of language has quantifiable consequences in the social stigma process.