Telling people about your epilepsy
One thing you might feel when you are told you have epilepsy, is that epilepsy somehow makes you different from other people. And you might be worried that people will treat you differently. This is one of the things young people have said to us. If you can take having epilepsy in your stride, and don’t feel it’s too big a deal, then it’s much more likely that your friends will see it the same way.
They may be a bit scared at first, especially if they don’t know anything about epilepsy and if they have seen you have a seizure. But once they get some information about epilepsy (like from this site) then hopefully they will feel much more relaxed about it. And if they know what to do if you have a seizure, then it may give you and your family some reassurance when you’re out and about.
Whether you’re at school, college, university or work, it’s a good idea to let someone know about your epilepsy, unless you have seizure control. Most people would see seizure control as not having had a seizure for about 12 months.
If your epilepsy is well controlled and you haven’t had a seizure for 12 months or more, your doctor might say you’re in remission. Sometimes people with epilepsy feel they no longer need to tell people about their epilepsy. But seizures can still happen, for example if you’re ill or you’ve forgotten to take your AEDs. So some people choose to tell people they spend time with about their epilepsy, and what to do to help if they have a seizure.
When you let them know you have epilepsy, your teacher, tutor or manager can be prepared, in case you do have a seizure. And they can think about anything they might need to do to make sure you and the people around you stay safe.
Other people’s attitudes
Sometimes other people might seem to treat you differently. And it may feel like this is because of your epilepsy. It might be, but it might not be. It’s important to remember that there could be other reasons for someone’s behaviour. You could try checking with the person you think is treating you differently. They might be able to explain what they’re feeling.
Sometimes someone can treat you differently through ignorance. It’s normal to feel scared of something you don’t understand. If you feel able to, you could just try and answer their questions and deal with their fears yourself. If it doesn’t feel okay to do this, you could point them to this website.
If it’s at school or college where this is happening, you could ask if it’s possible to arrange for someone to do epilepsy awareness training. It’s important that you feel okay about having this happen.
Find out more about epilepsy awareness training by Epilepsy Action
There are over 600,000 people in the UK with epilepsy. So getting a group of people, like your class or year group a bit more aware of it will be a great thing. It should help you because people will understand more about epilepsy. It will help other people with epilepsy. And the more people there are who understand about epilepsy, the better the world will be.
You and the people you live with
Talking to the people you live with can help you and them realise what information you all still need. The better informed you all are, the clearer you can all be about what you can and can’t do.
If you’re worried about having epilepsy, hopefully this information can help you to feel easier about it. And it should also give you some ideas about what to do to help yourself feel a little easier.
It may be that you’re fairly relaxed but that your parents are worried about you having epilepsy. Helping them to feel less worried is definitely in your interest. Once they are more relaxed it will be easier for you to be more independent.
Here are some things you could do that might help your parents feel less worried.
- Always carry an epilepsy awareness card around with you
- Put an alarm on your phone to remind you to take your tablets
- Download our seizure diary or app and record useful information in it
- Reassure your parents that you understand the risks of alcohol, drugs and late nights
- Get your friends to reassure your parents that they know what to do if you have a seizure
- Agree to check in with them every so often by phone, especially when you first start going out again
- Talk with them about maybe having a bed alarm in case you have a seizure in the night. You can switch this on when you’re ready to settle down for the night. An alarm may help your parents to worry less and sleep more. And someone who has had proper sleep is much easier to negotiate with!
Brothers and sisters
Brothers and sisters are also likely to be worried about you and might not know what to do. Show them this information. It could help them. Make sure that any other family members you spend a lot of time with have epilepsy information too.
Find out more about brothers and sisters of people with epilepsy.
Epilepsy Action would like to thank epilepsy specialist nurses Roz Atkinson, Janine Winterbottom and Carmel McGinn of Cardiff, Liverpool and County Fermanagh for their valuable contributions to this information.
This information has been produced under the terms of The Information Standard.
- Updated November 2014To be reviewed December 2017