Coming to terms with epilepsy

People can feel differently about their diagnosis; some people come to terms with it quickly, some take longer, and some feel that epilepsy will always be an ongoing issue for them.

Do I need to tell other people?

Whether to tell other people about your people about your epilepsy, who to tell, and when is a personal choice. There might be some people around you who it may be useful to tell. It might depend on how you are feeling about your diagnosis, and whether you are ready to talk to other people about it. 

Making decisions about who to tell at your own pace, may help you to feel more in control of what is happening. You make want to tell people about how they can help and support you, such as people you spend a lot of time with.

Some people don't know much about epilepsy, and they may expect you to explain it to them. It might be helpful to have some information that you could give to them to help them understand. You could give them a first aid card or information about epilepsy.

Some people you talk to may already have their own ideas about epilepsy. They might not understand that there are different types of seizures. They might not know what to say, or they might say something that is unkind or thoughtless. Sometimes it can help to think about what you would have thought about epilepsy before you were diagnosed. 

Thinking about what you want people to know about your epilepsy might help you to feel prepared if they ask you questions. Giving them something practical to do might help them to feel that they are helping you. Perhaps saying something like "I have epilepsy and it would really help me if you could..." might help them to respond to you in a way that you would find helpful.

Sources of help

Call our confidential helpline to talk about how you feel about your diagnosis or for a seizure diary, first aid card, helpline card and ID card. 

Information updated September 2022