Awareness and misconceptions about epilepsy

Here young people talk about general (lack of) awareness of epilepsy and describe some of the ways in which they deal with other people's reactions to or misconceptions about epilepsy. They also talk about the ways in which they discuss having epilepsy with other people.

Lack of awareness and misconceptions

Most young people felt that there is a huge lack of awareness about epilepsy. Some pointed out that the general ignorance about epilepsy sometimes explains why people don't know how to behave or react - it's not because they are deliberately mean. One person said that ignorance can cause fear and if people knew more about epilepsy, they could deal with it better.

Some felt that, because people generally knew so little about epilepsy, they didn't understand some of the small ways people with epilepsy had to avoid triggers, or lifestyle choices they made.

When telling people about their epilepsy, many found that others had some wrong ideas of what epilepsy is. Some common ones were that people immediately associated epilepsy with photosensitive epilepsy (“it's the flashing flights….”) or with only tonic-clonic seizures. This made some people worried that others might actually do harmful things if they had a seizure, for example sticking fingers or a spoon in their mouth. This could in fact be really dangerous. 

A few had also come across some very old-fashioned religious beliefs about epilepsy being caused by the devil or evil spirits. Some said they just laughed at these 'ridiculous' ideas, others found them very hurtful. One woman had been asked if epilepsy is contagious and she had just made a 'sarcastic comment' back to such an 'ignorant question'. Some people had also been accused of being drunk or high on drugs when they were confused and stumbling on their feet after having a seizure in a public place (see 'Experiences of different types of seizures and auras').

Talking about epilepsy

Many young people wanted to talk about having epilepsy with other people. Some people talked openly about their epilepsy with pretty much everyone, a few had only told a couple of their closest friends but most said they only told people who needed to know. People preferred to talk about epilepsy only with those they trusted to be sensitive and understanding, and with whom they were likely to spend a lot of time, like housemates, who needed to know what to do if they had a seizure. One woman with nocturnal seizures said,

“People don't really get told about [my epilepsy] unless they're close to me or they're going to be seeing me just throughout the night.”

A few people said that they wanted to get to know new people first before telling them about their epilepsy. They didn't want to introduce themselves as, 'Hi - my name is Sam and I have epilepsy' and be known as 'the girl/boy with epilepsy'. For more about young people's experiences of talking about epilepsy with their friends and their friends' reactions, see 'Friends'.

Most people said they were careful about who to tell about having epilepsy. Some worried about other people thinking that they were making a fuss about epilepsy or wanting them to feel sorry for them. Some had become wary because they'd experienced people changing how they behaved towards them after they'd told them about epilepsy. Sometimes it was very subtle; being awkward or gradually distancing themselves. Some said that people can also be scared of seizures when they don't understand what happens and what to do. A couple of people described how others pretty much expected them to fall to the ground in a full seizure the minute they mentioned they had epilepsy. 

Some had told pretty much everyone that they had epilepsy, including friends, employers and colleagues, and had never had negative responses. One man said he always tells people and, “If it's a problem, it's theirs, not mine”.

One woman pointed out that even if she doesn't tell people she has epilepsy, people around her will find out sooner or later because she'll have a seizure. Another woman said that having a seizure alert dog makes her otherwise invisible epilepsy visible, and open to questions from strangers that would otherwise not get asked.

Last reviewed May 2016.

Last updated May 2010.


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