Epilepsy

How epilepsy affects others

The reactions of other people to someone with epilepsy can have a profound effect on how they feel about themselves and their condition. How others might react can also affect whether they tell people about their condition or choose not to.

Many of the people we interviewed mentioned the lack of understanding and knowledge of epilepsy among the general public. Concerns about stigma and ignorance were also often discussed. Being open about epilepsy and raising public awareness of the condition were seen as important steps to correcting misconceptions and myths.

Many felt that, although people were generally more aware of epilepsy now than in the past, more information was needed to promote better understanding. People often talked about the lack of understanding among the general public as well as friends. Several people explained how friendships had been affected. One man discussed losing some friends but becoming closer to more loyal people.

Intimate relationships were also a concern for some people. One man recounted how different girlfriends had reacted to his epilepsy. Another discussed how the reactions of others and his lack of confidence had affected relationships.

Some people described the negative attitudes they had encountered in the street or at work. One man said that his church group had been unsupportive. People felt that a lack of understanding made epilepsy frightening for other people, especially if they did not know what to do if someone was having a seizure.

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Some explained how they told others about their epilepsy. One woman, who had poorly-controlled epilepsy and a Vagus Nerve Stimulator (VNS), told her local shopkeepers what to do if she had a seizure in their presence.

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Many of those interviewed felt that being open about their epilepsy helped them and might also help dispel ignorance about the condition. Several people stressed the importance of distributing information on epilepsy in schools, in the workplace and in the media.

Some people said that they had not come across any discrimination or negative reactions because of their epilepsy. Others explained that, although they did not keep their epilepsy secret, they generally only told those people who really needed to know. Several people pointed out that they did not want people's pity, and rejected the stereotyped images people can have of someone with epilepsy.

One man explained that he had only recently started telling people about his epilepsy. Like many others, he wanted epilepsy to be perceived and treated like any other condition.

Last reviewed May 2016.
Last updated March 2014
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