In a bid to highlight the serious impact that epilepsy can have, Epilepsy Action has placed a powerful advert in The Independent epilepsy supplement. It shows real photos of a girl’s black eye – the result of a tonic-clonic seizure. Peter Fox speaks to Megan – the girl in the photos – and explores the reasoning behind this imagery
For decades, Epilepsy Action has promoted a positive image of epilepsy. The organisation encourages independence in people with epilepsy and equality with people who don’t have the condition. The charity has traditionally surrounded epilepsy with positive imagery in a bid to challenge old ideas that having epilepsy made people victims or somehow less desirable.
Still, epilepsy isn’t always a walk in the park – as virtually all readers will know. Epilepsy Action has placed an advertisement this week in The Independent’s epilepsy supplement – available tomorrow on Purple Day, 26 March 2014. The ad may surprise some people. It shows a young woman – Megan – before and after a seizure. After the seizure, Megan has a sore and swollen black eye.
Some may be shocked by the images. There is certainly something uncomfortable and even confrontational about being faced with them. They show pain and they show vulnerability. They show a side of epilepsy that many people in the general public may not have seen before or even know about.
The advert coincides with Purple Day – the international awareness day for epilepsy. For the first time and in a very bold move, Epilepsy Action is highlighting the personal impact of seizures in a powerful way. So how did these images come about?
The girl with the black eye
Megan is 17. In many ways, she is a typical teenaged girl. Still, there is one thing she has had to deal with that most other teens haven’t.
Megan explains: “I had my first seizure and was diagnosed with photosensitive epilepsy at the age of 10. I have tonic-clonic seizures, myoclonic seizures and absences. The triggers for my seizures vary from flashing strobe lights (usually sunlight) to illness and stress.
“The misconceptions I have encountered about my epilepsy are when people question whether I can go to clubs and whether I can drink. Of course the answer is yes, although I have to be careful and sensible.”
Megan’s health and her safety are important to her. She takes care not to put herself in situations that might provoke seizures and she is lucky that she doesn’t have many.
She explains: “I don’t have seizures very often. The last one was in November 2013 and before that I was nearly a year free from seizures. Usually, after I have a tonic-clonic seizure, I just want to sleep. I feel very worn out and usually very sick.”
One particular seizure showed Megan just how upsetting the aftermath of a seizure can be. She woke from sleep one morning with a huge black eye.
Megan continues: “I just woke up with it, without any warning. I felt an aching on my eye so my first reaction was to think I had something in it. I then felt how swollen my eye was, so my initial reaction was to run to my mirror to see what had happened. When I got to the mirror and saw my face, I just began to cry.”
For anyone who has tonic-clonic seizures, this might not sound surprising. Injuries that happen during a violent seizure can take many forms, from bruises to broken teeth, even broken bones or dislocations.
Megan says: “I honestly think only people who have seizures or who have seen someone with an injury from a seizure can understand the injuries someone can get from a seizure. I think people will be surprised to see how violent the aftermath of a seizure can be. It might even make people realise that they shouldn’t put themselves at risk. Something more serious than a black eye may affect them.”
Megan contacted Epilepsy Action immediately after her black eye, sending the photographs of her injury that ultimately became the basis of the advert in The Independent supplement. She is an intelligent and pro-active young woman who felt moved to speak out and challenge misconceptions surrounding epilepsy.
The images of Megan’s bruises may seem shocking to some. Still, the idea behind the ad is designed to challenge what people think about epilepsy. Megan is brave enough to show these images of her injuries to the whole UK – and she is glad of the chance to help raise awareness.
Megan says: “I feel honoured to be part of the national advert that shows such a serious side to the condition. I can finally talk about my epilepsy and encourage people to share their stories and to not be ashamed of having a seizure or a physical injury. I want to tell people to be proud that they can carry on their lives and not let a serious condition like epilepsy stop them.”
While the type of imagery used in this ad may be different for Epilepsy Action, the thrust of the message is not. Megan’s ‘before’ image bears the words: “What does epilepsy look like to you?” The ‘after’ images say: “My epilepsy looks like this.”
While the ad is designed to show a more serious side of living with the condition, it also acknowledges that epilepsy is different for everyone. The ad forms part of a broader campaign that invites all people with epilepsy to get involved.
The organisation wants to hear from anyone who’d like to share their story and images of what their condition might look like. The long-term goal is to show the general public how people with epilepsy are all individuals. Their seizures are all different and the impact of epilepsy on their lives is different, too.
Encouraging people to be honest about their epilepsy and celebrating the strength and diversity of people with the condition is what this campaign is all about. Launching it on Purple Day is the perfect way to kick-start a bold move towards raising awareness in the general population.
Philip Lee is Epilepsy Action’s chief executive. He says: “The ad coincides with Purple Day, the international day for epilepsy awareness. We want to highlight what can happen during a seizure and challenge a few misconceptions at the same time. We hope some people might stop and think, and question what has happened to Megan. We want them to consider what it must be like for people living with epilepsy.”
Epilepsy is often described as the ‘hidden condition’. This campaign represents an incredible opportunity to bring the condition into the open and show what epilepsy is really like.
Philip continues: “We hope this campaign will challenge stereotyped images of epilepsy and make people think. Epilepsy is complex, and seizures and experiences vary hugely from one person to the next.”
Strength and diversity
The messages of the new Epilepsy Action campaign are certainly in line with Megan’s personal politics. She firmly believes that, in spite of the ‘hidden condition’, people with epilepsy should live full lives without limiting themselves.
Megan explains: “If there is anything I’d like people to take away from the ad, it would be to not put your safety at risk – but also don’t let epilepsy stop you. Live your life happy, free and independent. You have earned the right to accomplish anything you want.”
As a young woman, Megan has found that epilepsy has an impact on her family life and her independence. Inevitably, her family is very protective of her – which can cramp the style of a teenaged girl.
Nevertheless, Megan’s family are endlessly supportive. Her sister ran the Manchester 10K in support of Epilepsy Action in 2013. Her brother has designed epilepsy identity jewellery as part of his degree course. The family demonstrates Megan’s ‘can-do’ attitude.
One particular achievement stands out in Megan’s journey as an independent woman with epilepsy. At the age of only 15, she climbed Mount Meru in Africa.
Megan concludes: “It is the most important thing for me: to show that people with epilepsy are just as capable as everyone else!
“I climbed Mount Meru in Tanzania. It is 4,565m, which meant a three- or four-day climb. I was scared of having a seizure because it was so hot and I felt very dizzy. But climbing a mountain so high at such a young age is one of my biggest achievements.
“It proves to people – with and without epilepsy – that you can do anything you want to do and be proud of it. Don’t let anybody stop you!”
Help Epilepsy Action celebrate Purple Day! Share your epilepsy with others and challenge a few preconceptions about people living with the condition.
The organisation is asking people to share images on social media. Tweet images at @epilepsyaction on Twitter or post them on Epilepsy Action's Facebook wall. Use the caption “My epilepsy looks like this” and the hashtag #purpleday
Facebook and Twitter users are also invited to customise your profile picture on Purple Day (Wednesday 26 March) with a purple Twibbon.
The Independent ad is part of a bigger Epilepsy Action campaign for Purple Day and beyond. The organisation would also like people to share their images of ‘what epilepsy looks like’ that can be uploaded now in an online gallery.
Read more information about how to Support Epilepsy Action during Purple Day.