Your Epilepsy Story

Preparing your Epilepsy story allows you to provide context for anyone you want to talk to about your condition.

It could be an appointment with your healthcare professional – your Epilepsy story enables your healthcare professional to understand both your medical and personal needs.

Care planning allows you to tell a healthcare professional how your Epilepsy affects you day-to-day in your life outside of the appointment, not just in that moment. It will give you the opportunity to tell your story so far and also what you want your life with Epilepsy to look like.

First, choose where you want to write, what type of document suits you? It could be a word document, an email draft, a note on your phone, a piece of paper or whatever you choose.

If you are using a digital device, just copy and paste the questions below. If you are writing by hand, add in headings as appropriate – this is important so when you look back at your story it’s easy to understand.

You can update the document as things happen in your life, so by the time you have your appointment you are ready to give a complete picture of Epilepsy in your life. Remember to keep the document brief, it’s not a diary, it’s a quick snapshot to provide context.


To write your Epilepsy story, answer the questions in the sections below.

Describing your life


What does a good day look like for you?

What are you interested in?

What would you like to do more of?

Who is in your support network?

What matters most to you in your daily life?

Describing your Epilepsy


How does your Epilepsy affect you?

How has your Epilepsy affected you in the last week/month/year?

How do you feel about living with Epilepsy?

How do you measure the impact of Epilepsy on your daily life?

What does your Epilepsy stop you doing?

Listing your medication


What medications, if any, are you currently taking?