Lack of understanding of broader effect of epilepsy

Published: March 26 2021
Last updated: September 28 2022

One in four (23%) people believe epilepsy has no impact on a person’s life aside from having seizures, a new poll by Epilepsy Action has revealed.

The poll was carried out to mark Purple Day, the international epilepsy awareness day celebrated on 26 March. It showed more evidence of a “disconnect” between the reality of living with epilepsy for many people and the perception of it by the general public, Epilepsy Action explained.

Side-effects of epilepsy medicines, memory problems and impacted mental health are just some of the things that can affect people, the organisation said.

One third of people surveyed said they believe epilepsy does not impact a person’s mental health. In addition, two-thirds of people agreed with the suggestion that people “just need to be more positive when living with health conditions”.

As well as this, two-thirds of respondents said they would be afraid to even witness someone having a seizure. Epilepsy Action said this exposes a “stark disconnect” in understanding and compassion for people with epilepsy.

These findings are in contrast to a second Epilepsy Action poll, asking people with epilepsy for the one thing they wish people knew about the condition. The results show that nearly half of the respondents wanted wider understanding of the fact that epilepsy is about more than seizures. One in five people (20%) said their biggest wish was for better awareness that there are many different types of seizures. People also said they wanted more understanding that not all seizures are triggered by flashing lights and that epilepsy is a fluctuating condition.

Louise Cousins, director of external affairs at Epilepsy Action, said: “These new insights are stark but not surprising. The impact of living with epilepsy can take a huge toll on people’s lives, their happiness and wellbeing. Everyone’s experience of epilepsy is different, but it can’t be overcome just by ‘being more positive’. This attitude needs to change.

“Lack of knowledge and empathy feeds into fearful, harmful assumptions and people with epilepsy feeling further misunderstood and dismissed. By giving them a voice and encouraging conversations on Purple Day, we can really improve the public’s knowledge and compassion and close this gap in understanding.”

Comedian Maisie Adam was diagnosed with epilepsy when she was 14. She has shared her story for Purple Day (LINK to podcast ep). She said: “It’s totally normal for people to have those misconceptions about epilepsy, because of the information that’s out there at the moment. So much is frustratingly simplified, Hollywood-ified – it’s very bite-sized. It’s just the understanding that’s important and I think that comes from both sides. It’s about us being understanding of why people have those misconceptions but just hoping that people don’t assume.

“Epilepsy is so different for every single person. Be open to that huge variation.”

Marking Purple Day, Epilepsy Action’s podcast, epilepsycast, features a brand new episode focusing on misconceptions. It includes people like Murray, who explains that he wishes people wouldn’t assume someone with epilepsy can’t be in a work role with responsibility.

He said: “People with epilepsy aren’t stupid because they have the condition. People with epilepsy are found in all walks of life and at all levels in business, government, the arts and professions.

“I’ve personally had comments in the past from people telling me I shouldn’t have been in roles I’ve held over the years, including managing teams of up to 80 people, just because I have epilepsy.

“If someone ever tells you how you should feel or what you should do with you condition, don’t get mad, help them to understand it more.”

Charlotte has tonic-clonic, absence and myoclonic seizures. She said: “One of the biggest misconceptions about epilepsy for me is that it doesn’t affect your life. I’ve not had any area of my life not be affected by my epilepsy.

“It’s not just ‘they fall to the floor and have a tonic-clonic fit’, there are knock-on effects. I’m recording this with a very bitten and swollen tongue, having just had [a seizure] yesterday. I can’t really eat properly and people don’t really think of that stuff.

“There’s so much that’s affected by a seizure.”

To support Epilepsy Action’s Purple Day appeal and help people affected by epilepsy, visit the Purple Day page.