If I told you I have epilepsy… how would you react?

Would you see me differently from everybody else? Would you freak out and not know what to say? Would you talk about me behind my back? 

Epilepsy is still stigmatised, leaving many people feeling they need to hide their condition out of fear of judgment and discrimination. At work, with friends, and in love. People with epilepsy still find it difficult to talk openly about their condition. It’s time to change that by raising awareness of epilepsy and normalising the conversation around it.

 

 

Here’s how you can help to normalise the conversation:

Watch and share.

At work. With friends. In love.

If I told you I have epilepsy, how would you react?

These are some of the challenges that people with epilepsy battle with everyday. Should they say something, should they not? If they do… how will other people react?

Show your support for people with epilepsy, and help us reach more people to help normalise the conversation.

Please watch and then share the video.

In love. 

“I was scared to tell my partner in case he didn’t want to speak to me again. I thought he would think ‘she’s a burden’ and wouldn’t want to see me.”

If you have just started dating someone or your loved one or partner gets diagnosed with epilepsy, here’s how you can support them through it.

How to support someone you are in a relationship with.

Our short tips on how to support a partner and navigate your relationship.

Don’t be afraid to ask your partner questions about their epilepsy – being open and curious can build trust and show you care.

Make a plan together – understand that epilepsy is about more than just seizures and ask how you can best support them.

Respect their independence – it’s natural to worry about their safety but try not to be over-protective and give them the space they need.

Educate yourself and find support – through Epilepsy Action’s website, groups, CARE seizure first aid, even volunteering.

Be calm and reassuring during seizures – give your loved one time to come round and don’t be afraid to talk about your feelings together. Epilepsy affects everyone but through communication, we can build shared understanding that brings us closer.

Normalise the condition – just because they have epilepsy, it doesn’t define them or change who they are as a person.

At work. 

“I had a note from my GP stating all I needed was a phased return to work after being off due to my epilepsy. I was not allowed to return to work.”

If you work with someone who has epilepsy, or a colleague gets newly diagnosed, here’s how you can support them through it and help create a welcoming work environment for them.

How to support someone at work.

Our short tips for how to react and help a colleague in the workplace.

Ask your colleague about their epilepsy, the kind of seizures they have and how they want to be supported – everyone’s experience is different. A simple ‘how can I help?’ can really open up conversations and break down barriers.

Be respectful of a colleague’s right to share how and when they talk about their epilepsy – it can have a big impact on mental health, so be there to listen and support when needed.

Know the basics of seizure first aid – use CARE to help keep your colleague safe and supported.

Encourage epilepsy training and information sharing in the workplace – the more we work together, the bigger difference we can make.

Offering reasonable adjustments – such as starting later in the day or small changes to the work environment – can make all the difference in supporting a colleague with epilepsy.

Be patient and understanding – anti-seizure medications can impact things such as memory and someone may need time to recover after a seizure.

See the person for the strengths they bring to the workplace and team – epilepsy doesn’t define them.

With friends. 

“I lost all my friends due to my epilepsy. I would get mocked in school for having seizures and I just felt left out and lonely.”

If someone in your friendship group tells you they have epilepsy or you know someone already, here are some things you can do to help support them and open the conversation about epilepsy;

How to support a friend.

Our short tips for how to have the conversation and what to do if someone tells you they have epilepsy.

Educate yourself about epilepsy – Epilepsy Action has plenty of resources to help you understand the condition and how you can keep your friend safe with CARE seizure first aid.

Don’t be afraid to ask your friend questions about their epilepsy and don’t make assumptions – it’s different for everyone so ask them how best you can support them.

It can be frustrating if your friend has to cancel plans but epilepsy can be unpredictable and it can take someone a long time to come recover from a seizure. Be patient and understanding – check in on them to see how they are and if they need any support.

Be a good friend – even the smallest gestures can strengthen bonds. Respect their need for independence – don’t be overprotective, but let them know you’re there for them if they need support or just to talk. A message, a check in or a lift in a car can go a long way.

Be an epilepsy ally and challenge stigma – share posts that dispel misconceptions, boost understanding and spread the word to even more people.

Want to find out more about living with epilepsy?

The ‘Your Epilepsy’ booklet is a brilliant resource to understand more about living with epilepsy, the support available, and tips to manage your journey with the condition no matter which stage you’re at.

Download your copy for free below.