5 tips for telling people about your seizures

  • May 14, 2020
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If you are among the more than 30% of people who have drug resistant epilepsy (which is when your seizures aren’t controlled by medication), you might find it useful to explain your seizures to friends, colleagues and people at school so they know what’s going on.

You should only do what you feel comfortable with, but talking can tackle people’s misconceptions.

5 tips for talking about seizures

1.  Find a good time and place: If you’re telling a friend, choose a time when you’re not distracted by TV or games – find a quiet moment instead

2.  Get help talking about it:  If you need to speak in a group setting and don’t feel confident, consider asking a family member, friend or colleague to help you explain

3.  Talk about it in a matter of fact way: Try and describe your condition in a simple way and keep positive. You could share articles in Epsy with your colleagues or classmates. You might even share that it is not possible to ‘catch’ epilepsy.

4.  Let people know what to do if you have a seizure: Ask your treatment team for advice on the best way people can respond to your seizures

5.  Consider using these useful ‘opening lines’:    • "You may have seen me having a seizure and not know it. I wanted to talk to you about it and my epilepsy."    • "Sometimes I have seizures. They may seem scary but I am living with them, and I would like to tell you a bit more."

If you’re uncertain about how to talk about your seizures, your treatment team will also be able to provide lots of advice.

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