Coming to terms with having epilepsy

This page talks about being diagnosed with epilepsy, how you might feel about the diagnosis and where you can get support.

It can take time to adjust to a diagnosis of epilepsy. This might be true for you, and people who care about you like family and friends.

You might feel lots of different emotions. These are just a few that people have told us about:

  • Shock and disbelief – some people find the diagnosis hard to accept and question whether it’s right
  • Relief – some people feel relieved to have an explanation for their symptoms, especially if they’ve been happening for a long time
  • Anxiety – about having seizures, taking medicine, or how epilepsy will affect their life

All these emotions, and many others, are completely normal. Acknowledging the emotions you are going through, and talking to people about them, can help. You could talk to people close to you, or join one of our talk and support groups to meet other people with epilepsy. We have a befriending service that provides somebody to listen, if you are going through a difficult time. Our helpline is also here to offer advice and answer your questions about epilepsy.

Many people find that with time and support, they learn to manage their epilepsy and live well with the condition. Our online course, Epilepsy and your wellbeing, looks at ways to manage your epilepsy and improve your general wellbeing. This can help you to feel good and function well.

What can I do if I’m struggling to come to terms with my diagnosis?

For some people, it can take longer to come to terms with the diagnosis, and feelings of anxiety and low mood might not go away. If you find this is the case for you, talk to your GP, specialist or epilepsy specialist nurse, as they will be able to suggest ways to help. You can also visit our pages on anxiety and depression for more information and sources of support.

Telling other people about epilepsy

If you’re newly diagnosed, you don’t have to tell everyone straight away. Some people wait until they’ve thought about how epilepsy affects them and what support they need.

Telling people that you have epilepsy is your choice. But there could be some advantages:

  • The people around you can learn how to help you stay safe if they know your seizure type and what to look out for
  • It gives you the opportunity to explain the impact that epilepsy has on your life
  • It gives other people the opportunity to support you practically and emotionally
  • It raises awareness about epilepsy

You don’t have to tell your employer if you don’t think it will affect you being able to do your job safely and effectively

If you’re already in a job and you have a seizure or are diagnosed with epilepsy, you will need to tell your manager. They will need to do a risk assessment and look at possible reasonable adjustments for you. Find out more about work and epilepsy

If you are a parent, explaining epilepsy to young children may be difficult. We have books to help you with this.

Hear from others

We asked people with epilepsy about their experience of living with the condition, and what advice they would give to someone who has just been diagnosed.

Here’s what they told us:

“Rest when you need to, cry when you need to, laugh when you can – a lot! I’ve also been blessed with a brilliant neurologist, who has found the right balance of medication to get my seizures under control.”

“Don’t let it rule or ruin your life, hard to do at first, as I know only too well. But talking it through with family and friends, can and will help you to come to terms with it.”

“Don’t be afraid to ask questions – no matter how trivial or daft you feel it is ask it anyway! If you don’t understand get them to explain it until you do.”

“Know the importance of the condition and taking your meds, but don’t let it define you. Know the precautions and changes you need to take, but don’t let it consume you or worry about it. Just be aware and mindful. It’s been 17 years since diagnosis and I still have to work at finding the balance but it’s not a burden.”

“Live your life as if your next seizure could be tomorrow, but never live your life as if that seizure should mean you have to wrap yourself in cotton wool.

If you can live with little adjustments, medical ID, free or discounted travel instead of a driving licence, showers instead of baths… then no matter when your next seizure is, you’ll live a full life that’s always going to be your normal life no matter if you’re seizure free or not.”