Stigma and Society

Epilepsy comes with social challenges as much as — and sometimes more than — its medical ones. Misunderstood for centuries, this condition can still be met with prejudice and stigma. This chapter aims to help you cope with stigma and protect your child.

What Is Stigma and Why Is It Harmful?

Stigma is when a person is labeled negatively and excluded because of a certain trait. In epilepsy, stigma is fed by false beliefs (thinking it's contagious, thinking it's "madness," thinking it's dangerous). The impact of stigma can be even heavier than the illness itself: loss of self-confidence, social isolation, a need to hide, and depression in the child; and loneliness and shame in the family. This is exactly why fighting stigma is part of treatment.

Ways to Cope with Stigma

• Arm yourself with knowledge. The antidote to false beliefs is accurate information. Inform the people around you (relatives, teachers, neighbors) gently but firmly.
• Decide on openness together with your child. Decide together with your child whom to tell about the epilepsy and how much. The goal is neither to hide it in shame nor to force it into the open, but to find a balance where the child feels safe.
• Be a role model. If you speak about epilepsy calmly and maturely rather than with shame and whispers, your child will learn to do the same.
• Share positive examples. Throughout history and today, there have been many people who lived with epilepsy and achieved great things. These examples give your child hope and pride.

Knowing Your Rights

Children with epilepsy and their families have certain rights in education, health, and social life. Learning about your rights — such as securing appropriate support and accommodations at school, and protection against discrimination — is empowering. These rights vary by country; the relevant associations and official institutions can guide you on this (see the Appendix).