EPILEPSY SUFFERERS SHARE THEIR EXPERIENCES IN HONOUR OF PURPLE DAY
This article was written for a university assignment on the 26th March 2019.
People across the country are raising awareness of epilepsy in honour of the annual Purple Day.
Founded by Cassidy Megan in 2008, Purple Day aims to highlight the realities faced by sufferers of epilepsy, providing an public outlet annually on the 26th of March. Although epilepsy is considered a common condition, affecting 50 million people globally, public awareness of side effects remain low. Purple day has revealed the discontent shared by many sufferers, who take to social media to express their concerns surrounding the treatment of epilepsy in society.
For Charlotte Callister, 28, Purple Day is crucial in providing the education that she didn’t have, prior to her diagnosis. “I had never heard of epilepsy before I was diagnosed. I didn’t meet anyone else who had epilepsy until I was about 17, which was difficult as I felt quite alone,” she says. Like many sufferers, Callister utilises social media in order to raise an awareness that she would have benefitted from herself.
Callister, who had her first seizure at only 10 years old, is keen to highlight that seizures are only the tip of the iceberg when it comes to the condition, revealing a number of severe side effects. These include: “burst blood vessels in my face due to a lack of oxygen”, “a badly bitten tongue meaning I can’t talk or eat”, and “numerous black eyes that make people stare at me and my husband”.
The frustration surrounding a lack of representation in society is shared among many sufferers, such as Shar Weil. Weil reveals that she almost died during her pregnancy, as a result of a brain tumour which triggered her seizures.
“As a sufferer of epilepsy in my teens, I didn’t know anyone else who had the same issues as me,” she says, adding: “It would have been amazing to have access to support groups and other people who had more experience living with epilepsy so I had better coping strategies.” Weil's support for Purple Day also stems from the necessity of research, as she praises the day for encouraging awareness which she hopes will lead to advancements.
Purple Day is essential for many to voice their concerns, especially regarding spaces in society which exclude them, due to triggers which many non-sufferers are oblivious to. Matt Owen, 54, was diagnosed with Petit Mals epilepsy at age 13, and is frequently triggered by steam and extreme changes in temperature. “If I go into a hot restaurant, I have to turn on my heels and walk out because it could get messy,” he says. Though flashing lights are often associated with the condition, less than 5% of people with epilepsy are photosensitive, meaning that sharing other triggers online is one of the educational aspects of Purple Day.
Owen also hopes to utilise the day in order to destigmatise the condition, which he feels many people fear unnecessarily, saying: “People should be at ease with epilepsy, we’re normal, just like you,” adding, “we just have this thing we’re born with, which can be a bit of a pain.”
Among many sufferers sharing their experiences on social media is Thomas Ryalls, a writer of musicals and plays. Ryalls aims to spread awareness of epilepsy using the form of video, in order to highlight how the general public can alter their actions in aid of sufferers, specifically within the theatre community. He does so by creating a Youtube video listing 3 easy ways that theatres can improve accessibility to fans with epilepsy, helping to promote inclusivity among his own community.
Ryalls is currently making a show about how his first seizure changes his life, and how his family adapted afterwards. He hopes that, by seeing the face of a person who lives with epilepsy, sufferers will feel empowered. “There was a point in my life where we didn’t know if I would ever be able to live independently but now I do and I hope that is comforting to young people with epilepsy," Ryalls says.
Societal misconceptions are a point of frustration among sufferers, meaning that Purple Day remains an essential outlet to those who live with epilepsy on a daily basis. Francesca Paige, 38, is among thousands of users who chose to share their story on Twitter, in hopes of creating a community online.
“I decided to share as I’ve found it quite surprising how common it is, yet not much is known about it,” Paige says, adding: “It’s important to raise awareness of the many types of seizures and how it affects not just the sufferer, but those around them.”