Telling others about your epilepsy header

    Telling others about your epilepsy

    Fast facts

    1. 1
      If you have had epilepsy since childhood many people in your life will already know you have epilepsy
    2. 2
      If you are told you have epilepsy as a young person you can have some control over who you tell and when you tell them
    3. 3
      If you’re newly diagnosed, you don’t have to tell everyone straight away. You might want to wait to tell some people until you’ve worked out how epilepsy affects you and what support you need
    4. 4
      How much you tell other people about your epilepsy will depend on what they need to know to keep you and others safe
    5. 5
      Some people feel nervous about telling people they have epilepsy
    6. 6
      Some people decide they don’t need to tell people as their seizures are completely controlled

    Why tell people?

    It’s your choice but there could be some advantages:

    "Some people go to great lengths to keep epilepsy a secret. The energy and anxiety that goes into hiding the reality of having epilepsy can be overwhelming for some. This lack of acceptance is not only emotionally draining but can also lead to you becoming isolated and reducing your contact with others."
    Markus Reuber, Professor of Clinical Neurology

    Explaining epilepsy to others

    Some people are not sure how to explain what epilepsy is. Here are some things you could say about epilepsy and how it affects you.

    Who to tell?

    The decision to tell someone about your epilepsy will depend a bit on who it is.

    female friends talking

    Stories by you

    Read Rachel’s thoughts about telling people she has epilepsy.

     

    Read Paige’s story about telling her employer she has epilepsy during the job interview.

     

    Comedian Maisie Adam was featured in Epilepsy Today magazine talking about why she decided to tell hundreds of people she has epilepsy.

    Student talking to his tutor

    Do something

    Think about the points above: Explaining epilepsy to others.

    To be prepared for the next time you want to tell someone, plan what you will say to explain your epilepsy.

    More info

    How2tell is an app by Epilepsy Ireland. It uses the experiences of others for ideas on how to tell people you have epilepsy

    How2tell

    More info about telling people at work you have epilepsy is on the Epilepsy Action website

    At work

    Some safety check questions to help you decide if telling someone would keep you safe

    Safety check
    Updated 12 May 2020
    Review 12 May 2023
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