Dos and Don’ts Epilepsy Guide

There are around 456,000 people who have epilepsy in the UK and around 50 million worldwide. Given the number of people with epilepsy, there is still an unacceptable amount of misunderstanding, misinformation and stigma surrounding the condition.

Whether you have friends, family members or work colleagues with epilepsy and you want to know more about epilepsy then you can use our simple guide. If you don’t have epilepsy then it can be difficult to know what to say and do. Our guide is designed to help spread awareness around epilepsy and etiquette including  things you should know as well as dos and don’ts around epilepsy.

If you have epilepsy then please share this guide with your friends, family, colleagues and help raise awareness.

Epilepsy Etiquette Infographic

For anyone using a screenreader or similar device here is all of the information contained in our Epilepsy Infographic

Epilepsy Dos and Don’ts

Don’t refer to me as an epileptic or label me. 

I am an individual with many interesting things about me. I also have epilepsy.

Don’t assume that epilepsy is a mental condition. 

Epilepsy is a physical disorder that has nothing to do with mental health or illness.

Don’t offer me advice on my epilepsy. 

I know my condition best. Unsolicited advice and tips are not helpful.

Don’t presume that everyone with epilepsy has the same condition.

There are many different forms of epilepsy. Seizures can differ between people.

Don’t assume that living with epilepsy is easy.

It’s extremely hard physically and emotionally living with epilepsy.

Don’t patronise me because I have epilepsy.

Treat me with respect and don’t talk down to me. I want to be understood without judgement or preconceived assumptions.

Epileptic Seizures Dos and Don’ts 

Do talk to me about my needs and how you can help.

Feel free to discuss my epilepsy with me and find out how you can help. Listen to any instructions I have.

Don’t use words like fits, spells, epis or attacks.

Just call them seizures. Ignorance and discrimination only make it harder so stick to the facts.

Do give me time alone after a seizure. 

I may be confused, disorientated and embarrassed so just leave me alone to gather myself.

In the event of a seizure…

Dos

• Guide me from danger – remove harmful objects from nearby & cushion my head.
• Stay with me until I am recovered.
• Call an ambulance if the seizure lasts more than 5 minutes.
• Aid my breathing by gently placing me in the recovery position once the seizure has finished.
• Be calmly reassuring.

Don’ts 

• Restrain my movements.
• Put anything in my mouth.
• Move me unless I am in danger.
• Attempt to bring me round.
• Give me anything to eat or drink until I am recovered.

Thanks to Tiffany Kairos from The Epilepsy Network and Linda Metson of Epilepsy Hackney for their input.
Please help raise awareness by sharing our etiquette and epilepsy guide. For more information on epilepsy visit www.epilepsysociety.org.uk. If you want to talk to our small dedicated team about epilepsy life insurance then give us a call on 01275 404268 or get a quote.