Exposed and Humiliated: People with Epilepsy Face Public Seizure Stigma, and the Fear of Being Filmed

Epilepsy charity launches CARE Acronym and free posters to create a more supportive environment for people with epilepsy in public space as it’s revealed fears lead people with epilepsy to avoid social interaction.

· Over 50% of people with epilepsy in the UK have avoided public places due to the fear of having a seizure and experiencing stigma and misunderstanding.

· 47% of people with epilepsy have been accused of being drunk or on drugs after having a seizure in public.

· 8% of people with epilepsy have been robbed, and 7% have been physically assaulted while having a seizure in public. 10% search social to see if videos or comments exist.

· Over 90% of people with epilepsy believe that public spaces do not do enough to help or make people aware of what they should do if someone has a seizure in public.

· Today a new campaign launches to encourage us all to understand what to do if someone has a seizure in public – Watch Here

Epilepsy is a condition that affects around 630,000 people in the UK. For many of them, the experiences of having a seizure in public are nothing short of harrowing.

The stigma surrounding epilepsy and potentially having a seizure in public is causing people to feel isolated and excluded from social events, with over 50% reporting that they have avoided public places due to the fear of having a seizure.

People with epilepsy also face emotional trauma and physical danger when having seizures in public.

Shockingly, over 47% of people with epilepsy reported being accused of being drunk or on drugs after having a seizure in public, further adding to the stigma and misunderstanding surrounding this condition.

Even more alarmingly, 8% reported being robbed, and 7% have been physically assaulted. This showcases the urgent need for greater public education and understanding about epilepsy.

Shockingly, 10% of respondents said that they have searched social media to see if people have shared videos or comments about them after they have had a seizure in public. 3% said that they search every single time this has happened, and 2% reported finding videos or comments about themselves.

Over 68% of respondents said that they feel confused when they recover from a seizure in public, and 55% said that they feel embarrassed – can you imagine feeling vulnerable to find people filming, pointing and laughing?

The emotional toll is also heavy – half of people with epilepsy feel embarrassed, exhausted, and fatigued after having a seizure in public. The emotional trauma doesn’t end there, with people reporting feelings of confusion, anxiety, vulnerability, and depression.

Even in the workplace, people with epilepsy are often held back and stigmatized. Over two-thirds of people with epilepsy feel that their condition is a barrier to their career progression, and over a third of people with epilepsy have heard colleagues make derogatory comments about their seizures.

Over 90% of people with epilepsy believe that public spaces do not do enough to help or make people aware of what they should do if someone has a seizure in public. This is concerning, as over a quarter of people with epilepsy reported being restrained after having a seizure in public, which can cause significant harm.

It’s time for us to take action, raise awareness, and create a more supportive and inclusive environment for people with epilepsy.

Today, Epilepsy Action is launching the CARE acronym to teach the key things we need to know and do when it comes to looking after someone having a seizure in public.

C – Comfort

Cushion their head with something soft to protect them from injury

A – Action

Start to time the seizure, and clear the area of anything that might be harmful. You could also check if the person has a medical ID or bracelet with more information on how to help

R – Reassure

After the seizure stops, put the person in the recovery position and reassure them as they come round

E – Emergency

Call 999 if the person:

– has a seizure lasting longer than 5 minutes

– is not regaining consciousness

– goes straight into another seizure

– has trouble breathing after the seizure stops

– has never had a seizure before

The charity is hosting and sharing a free action-led poster for all public spaces to download and as ‘go-to’ guides to help people take the right action and also help to make people with epilepsy perhaps feel more comfortable.

You can download it here: www.epilepsy.org.uk/care