Prejudices against people with epilepsy as perceived by affected people and their families

Prejudices can impair social participation of people with epilepsy.

From 2019 to 2020, we invited people with epilepsy and their relatives across Germany to fill in a questionnaire.

Two hundred and thirty people with epilepsy (PWE, median age: 40 years; min./max.: 19/83; 66% female) and 103 relatives (REL, median age: 42 years; min./max. 23/70; 83% female) took part in the survey. 44% PWE and 40% REL said prejudices against PWE had not declined in recent years. Of PWE, 64% reported they had experienced prejudices themselves. In an open question with multiple answers possible, 71% of the PWE described concrete prejudices against PWE, 62% of the REL did so. The reported prejudices concerned symptoms of epilepsy (37% PWE; 23% REL), academic or occupational performance (47% PWE; 38% REL), social or family life (27% PWE, 29% REL), and other topics (7% PWE, 4% REL). Of PWE, 88% said all or almost all relatives knew about their condition, 74% stated this applied to all or almost all friends, and 48% told all or almost all colleagues about their epilepsy. Of PWE, 94% would want to know if a relative had epilepsy, 87% would like to know about a friend's epilepsy, 70% about a colleague's epilepsy. Fear of stigmatization was a reason for not always communicating the condition according to 20% PWE and 63% REL. None of PWE and 16% of REL named shame as a reason.

People with epilepsy still experience prejudices and fear of stigmatization hinders an open communication about the condition.