- Telling people about your epilepsy
- Other people’s attitudes
- You and the people you live with
- Brothers and sisters
Telling people about your epilepsy
One thing you might feel when you’re 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. It can really help if you can try to take having epilepsy in your stride, and not to 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. But once they get some information about epilepsy, for example from the Epilepsy Action website, then hopefully they’ll 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.
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 stay safe.
If your epilepsy is well controlled and you haven’t had a seizure for 12 months or more, you might feel you no longer need to tell people about your epilepsy. But seizures can still happen, for example if you’re ill or you’ve forgotten to take your epilepsy medicine. 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.
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 the Epilepsy Action website.
If it’s at school or college where this is happening, you could ask if it’s possible to arrange for someone from Epilepsy Action to do epilepsy awareness training. It’s important that you feel okay about having this happen.
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 might or might not be possible for you.
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 or carers are worried about you having epilepsy. Helping them to feel less worried is definitely in your interest. Once they’re more relaxed it will be easier for you to be more independent.
Here are some things you could do that might help your parents or carers 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 an app and record useful information in it
- Reassure your parents or carers that you understand the risks of alcohol, drugs and late nights
- Get your friends to reassure your parents or carers that they know what to do if you have a seizure
- Agree to check in with your parents or carers every so often by phone, when you go out
- 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 everyone worry less and sleep more. But they can be expensive and are not suitable for all types of seizure
Brothers and sisters
If you have brothers or sisters they are also likely to be worried about you and might not know what to do if you have a seizure. You could show them this information. It could help them. It’s a good idea for any other family members you spend a lot of time with to have epilepsy information too.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact the Epilepsy Action Helpline on freephone 0808 800 5050.
Epilepsy Action would like to thank epilepsy specialist nurses Neil Williamson at University Hospital Lewisham and Ruth McNulty at St Luke’s Hospital, Bradford for their contribution to this information. They have declared no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated June 2018To be reviewed December 2021