Telling others about your epilepsy
Fast facts
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1If you have had epilepsy since childhood many people in your life will already know you have epilepsy
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2If you are told you have epilepsy as a young person you can have some control over who you tell and when you tell them
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3If you’re newly diagnosed, you don’t have to tell everyone straight away. You might want to wait to tell some people until you’ve worked out how epilepsy affects you and what support you need
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4How much you tell other people about your epilepsy will depend on what they need to know to keep you and others safe
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5Some people feel nervous about telling people they have epilepsy
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6Some people decide they don’t need to tell people as their seizures are completely controlled
Why tell people?
It’s your choice but there could be some advantages:
- It may not be obvious to other people that you’re having a seizure
- If other people know about your seizure types and what to look out for, they are in a better position to help you
- Having a seizure when the people around you don’t know what to do can mean you are not as safe as you could be
- 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
"Some people go to great lengths to keep epilepsy a secret. The energy and anxiety that goes into hiding the reality of having epilepsy can be overwhelming for some. This lack of acceptance is not only emotionally draining but can also lead to you becoming isolated and reducing your contact with others."
Markus Reuber, Professor of Clinical Neurology
Explaining epilepsy to others
Some people are not sure how to explain what epilepsy is. Here are some things you could say about epilepsy and how it affects you.
- Epilepsy is the tendency to have seizures
- A seizure is a sudden burst of electrical activity in the brain
- There are different types of seizures. My seizures are called ______
- My seizures cause me to ______ (Lose awareness / fall to the ground / look like I’m not listening, have muscle jerks). Think about how you would describe your seizures to other people
- My seizures usually last between X seconds / minutes
- As well as seizures, epilepsy also affects me in these ways ______
- I take epilepsy medicine to try and control the seizures (or explain any other treatment you have)
- After a seizure I ______
Who to tell?
The decision to tell someone about your epilepsy will depend a bit on who it is.
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Family
- If your family don’t already know, then telling them may offer you some valuable practical and emotional support
- You may want this to include your wider family. Your immediate family could help with this if it feels a bit more difficult
- If you need to tell a child, Epilepsy Action has resources to help you with this
More info
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Friends
- You might want to start by telling close friends
- Choosing to tell friends while you’re doing something else can make the conversation easier (like walking, eating lunch, hanging out)
- Think about how your friends may feel and the first reactions they may have. This could help you to feel ready for the conversation
More info
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Romantic relationships
- There’s no right or wrong time to tell a new partner you have epilepsy
- Some people say that they get it out in the open straight away
- Others say they wait until they have got to know the person a bit
- Having your partner know you have epilepsy means they are in a much better position to support you practically and emotionally
- It is very possible your partner also needs practical and emotional support in one way or another. This does not need to be a one-way street
More info
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When applying for jobs
- Deciding whether to share information about your epilepsy with a potential employer will depend on the job and how well controlled your epilepsy is
- A potential employer is not allowed to ask for medical information before appointing someone unless they feel it could directly affect someone’s ability to do their job
- Before applying for a job, do your research and check what the risks might be and what reasonable adjustments might help. If you have this ready, you’re presenting an employer with a solution rather than a problem
More info
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Manager at work
- 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
- If you don’t tell your employer, and it does affect your ability to do your job safely, they could legally dismiss you
More info
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People you work with
- Being open and relaxed about your epilepsy can often make communication easier
- If you tell people at work, they will probably feel more confident about helping you if you have a seizure
- If you don’t tell people at work, they won’t be able to offer you practical or emotional support. And you might have problems explaining about time off
- Colleagues are likely to be more understanding about reasonable adjustments or time off sick if they understand why this is
More info
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School, college or university
- If your teachers, tutors or lecturers know you have epilepsy there may be things they can do to support you
- This could be strategies to help you remember things or extra time in exams
- They could write an individual healthcare plan (IHP) for you to help all your teachers or tutors understand what you need
- It’s up to you if you tell other students
- If you’re having regular seizures, telling them may increase the chances that they’ll be able to offer you practical and emotional support
More info
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Leisure activities
If you’re a member of clubs or do activities, does anyone there need to know? Some leisure and swimming facilities now have a sign up asking people to tell them if they have any of the following conditions, of which epilepsy is one.
“One of my seizure triggers is exercise. My seizures are quite well controlled but when I go swimming, I always tell the lifeguard I have epilepsy and ask them to keep an eye on me in the pool.” Paige
More info
Stories by you
Read Rachel’s thoughts about telling people she has epilepsy.
Read Paige’s story about telling her employer she has epilepsy during the job interview.
Comedian Maisie Adam was featured in Epilepsy Today magazine talking about why she decided to tell hundreds of people she has epilepsy.
Do something
Think about the points above: Explaining epilepsy to others.
To be prepared for the next time you want to tell someone, plan what you will say to explain your epilepsy.
