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The consequences of social stigma

The consequences of social stigma for people with epilepsy are sometimes even more difficult to overcome than the seizures themselves, and include:
  • Psychological problems. Societal discrimination may cause people with epilepsy to lose confidence in themselves or feel inferior to others. This may contribute to psychological problems such as depression, and interfere with personal relationships.
  • Legalised discrimination. In some parts of the world, prejudice has influenced legislation that affects people with epilepsy. For example:
    • In China and India, epilepsy is commonly viewed as a reason to prohibit or annul marriages.
    • In the UK, a law forbidding people with epilepsy to marry was only repealed in 1970.
    • Until the 1970s in the USA, it was legal to deny people with epilepsy access to various recreational centres and public buildings.
  • Reduced employment opportunities. People with epilepsy have higher rates of unemployment and underemployment than the rest of the population, and tend to retire earlier, largely because of social stigma. For example:
    • A survey in China showed that 31% of respondents believed that people with epilepsy should not be employed.
    • In a recent research survey, nearly a quarter of Nepalese people with epilepsy believed they were unable to work. As in many countries, they had been culturally conditioned to underrate their abilities.
  • Lack of proper medical treatment. In developing countries, 60-90% of people with epilepsy receive no proper treatment. This is only partly due to economic barriers and inadequacies in health care provision: misconceptions about epilepsy are also an important factor in preventing people from accessing successful treatment. Culturally informed ideas about epilepsy often lead people to choose traditional healers over conventional forms of treatment, such as anti-epileptic drugs.

Combating social stigma
Education programmes to dispel myths and misconceptions about epilepsy are vitally important in combating the social stigma attached to the disease. People with epilepsy speaking out about their condition also contributes greatly to this process.

One such programme is the Global Campaign Against Epilepsy, initiated by the World Health Organisation in conjunction with the International Bureau for Epilepsy and the International League Against Epilepsy. A primary aim of the campaign is to bring epilepsy "out of the shadows", and to deal with the consequences of social stigma, particularly in the developing world.

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