1A lot of people with epilepsy don’t experience stigma or unhelpful comments
2Stigma is negative attitudes and beliefs about someone who is different. Discrimination is acting on those beliefs
3People sometimes have inaccurate or negative beliefs about people with epilepsy, including all the things you apparently can’t do
4You might hear comments that aren’t correct. For example, someone saying a person with epilepsy can’t go to a concert because they wrongly think that the lighting will cause a seizure. If someone doesn’t have photosensitive epilepsy that’s incorrect
5You may or may not think the things you hear and experience are stigma
6If you think you are being treated differently at work or in accessing services, this could be disability discrimination. UK equality laws exist to protect you from discrimination
"People with epilepsy have reported that stigma, whether internally felt or actually encountered, is one of the greatest challenges they face."
J S MacLeod and J K Austin, researchers
- Awareness raising can start to challenge the ignorance on which stigma is usually based
- Finding out what people actually believe by making them say it out loud can sometimes be the best way to start a conversation
- Try not to let what others say stop you from trying things that it may be OK to do
- Recognise how unhelpful comments and stigma affect you, because it can affect your wellbeing. If you need to, seek help. There’s more information about this on the mental wellbeing page
- You could discuss stigma issues with your healthcare team who could offer support or contact the Epilepsy Action Helpline
- You might not be able to change what other people believe, but you can decide not to take it personally
This website was developed with a group of young people with epilepsy. Here are their experiences about unhelpful comments, misunderstandings about epilepsy and how they deal with them.
Stories by you
Think about a time when you experienced negative views, stigma or unhelpful comments about your epilepsy. How did you handle it? Is there anything you’d do differently if you were in the same situation again?