Unhelpful comments and stigma header

    Unhelpful comments and stigma

    Fast facts

    1. 1
      A lot of people with epilepsy don’t experience stigma or unhelpful comments
    2. 2
      Stigma is negative attitudes and beliefs about someone who is different. Discrimination is acting on those beliefs
    3. 3
      People sometimes have inaccurate or negative beliefs about people with epilepsy, including all the things you apparently can’t do
    4. 4
      You 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
    5. 5
      You may or may not think the things you hear and experience are stigma
    6. 6
      If 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

    Top tips

    Unhelpful comments

    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

    Read Anky’s experience of stigma…

    Watch

    • Things not to say to someone with epilepsy

      A film by BBC Three / Mentorn Media. Note: there's some swearing

    • Epilepsy stigmas

      A vlog by Annie Bean

    Do something

    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?

    "An Epilepsy Action survey found that stigma in the UK is relatively low. Around 90% of the UK public have a neutral to positive attitude about epilepsy."
    Attitudes towards epilepsy in the UK, 2018 survey

    More info

    Read more about the research on public attitudes to epilepsy in the UK by Epilepsy Action

    Public attitudes
    Updated 12 May 2020
    Review 12 May 2023
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