Stigma is a significant contributor to poor physical and mental health in people with epilepsy and will not be improved with a single approach. A multipronged strategy, which is culturally appropriate, multisectoral and collaborative, is needed.
Misconceptions and poor understanding about the nature of epilepsy contribute to the burden of disease and lead to stigma. This includes the perception of epilepsy as a form of insanity, ruining people’s lives, and being untreatable or contagious. Misconceptions and negative attitudes cause people with epilepsy to feel shame, embarrassment and disgrace. The impact of feeling socially excluded contributes to the physical, psychological and social burden of epilepsy. Stigma can delay appropriate health care seeking, access to care, health financing and availability of treatment.
Institutionalized discrimination in epilepsy affects employment, education, marriage and childbearing, and driving regulations. Discriminatory laws exist in a number of countries. Most were repealed decades ago, but the legacy of these laws can still lead to misconceptions and discrimination.
Direct investments in health care do not necessarily lead to improvements in epilepsy-related stigma. To reduce stigma, funds need to be directed toward epilepsy awareness and stigma-reduction programmes. Policy-makers can reduce stigma by changing laws that are punitive to people with epilepsy.
The impact of feeling socially excluded contributes to the physical, psychological and social burden of epilepsy.
A multisectoral public health response needs to include interventions that improve the knowledge of individuals and their families, teachers, employers, health care providers, disability service providers, care providers, first responders, traditional healers, media, community and policy-makers.