Emma Evens was just a child when she had her first seizure, but the 32-year-old admits it took her decades to come to terms with having a condition that few people truly understood.
Not only did she have to get used to never knowing when and if it might strike, but Emma says that dealing with other people’s fear, discrimination and ignorancealso had a huge impact on her.
‘It took me a long time to be comfortable with, even though epilepsy is something I’ve had since I was born,’ Emma tells Metro. ‘I used to have chronic episodes at school, where I would fall unconscious, before my body began to stiffen and then jerk, which can be scary for anyone watching.
‘The seizures got worse as a teenager and happened pretty frequently. I remember when I started secondary school that I was excited to make new friends, but people around me were scared.
‘I felt like I had to behave a certain way because I was seen as the girl that was always on the floor. I desperately wanted to be normal, but I felt so alone.’
For Sarah
Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.
Sarah died aged 39 from SUDEP - sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.
With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.
From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.
Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.
When Emma left school and entered the workplace after college, she recalls that her struggles were far from over. Just months after training as a nursery assistant, she felt forced to resign.
‘My colleagues and manager took me on thinking they were being inclusive, but then didn’t put enough measures in place to support me,’ she explains.
‘I’d often be left with young children on my own, which was dangerous for the kids because I could’ve had a seizure at any moment.’
Emma, who experiences ‘tonic clonic’ seizures – characterised by the stiffening and jerking of muscles followed by loss of consciousness – believes she has experienced discrimination by three different employers to date.
She’s been disciplined multiple times over ‘excessive’ sick leave, and says colleagues have avoided her out of fears she would have a seizure in front of them.
‘When I was an apprentice, I was told by HR that I could only have three seizures a month – as if I was somehow in control,’ Emma recalls. ‘I tried to explain that I cannot control when I’m going to have a seizure, so I was put on a second disciplinary.
‘Eventually, my apprenticeship came to an end and I was let go. It was as if they weren’t listening to me as a person or willing to understand the way my epilepsy impacts me. Looking at me I’m a young, fit and healthy person, but there’s this hidden condition I live with.’
Epilepsy - the facts
Epilepsy affects an estimated 633,000 people in the UK – around one in every 100 people. One of the most common neurological conditions globally, 87 of us are diagnosed every day.
It’s also one of the most common long-term conditions in childhood, impacting five young people in every secondary school, according to the Joint Epilepsy Council.
Research from the charity Young Epilepsy found 36% of young people and parents reported not getting the support they required for full participation in school life in the 2021-22 academic year.
Meanwhile research carried out by Epilepsy Action found that two thirds of people living with the condition have experienced unequal treatment or discrimination at work.
A survey by Epilepsy Action revealed that almost nine out of 10 people with the condition felt the person carrying out their benefits assessment did not have an understanding or knowledge about epilepsy.
Emma is just one of a number of people to report cases of disability discrimination in the workplace and the wider challenges that epilepsy can pose to employment prospects. Now an experienced executive assistant and champion of accessibility within the workplace, she urges companies to update their disability and inclusion policies.
With 42% of employers admitting in a survey by Epilepsy Action, that they would not hire someone with the condition, there’s a real ‘lack of knowledge of what actually needs to happen if someone has a seizure and the side-effects that often accompany the condition,’ according to Kasam Parker, CEO of the charity Voice for Epilepsy.
‘Employees should be able to explain to employers what impact it has on them and what adjustments they require,’ he adds.
According to Professor Ley Sander, head of the Department of Clinical and Experimental Epilepsy at UCL Queen Square Institute of Neurology, one of the biggest challenges facing people with epilepsy is uncertainty.
‘Not knowing if there will be another seizure is always a big worry,’ he tells Metro. ‘Often, not knowing when the next seizure will be or not knowing what the future will bring can have a bigger impact than the seizure themselves.’
When Murray Goulder was diagnosed after having a seizure during a driving lesson, the relief was overwhelming.
Having spent weeks trying to find an explanation for the seizure, the then 17-year-old was reassured by his neurologist that with the correct anti-epileptic medication he could maintain a normal life.
‘Until then, I was worried I might have a brain tumour,’ he remembers. ‘But when I discovered it was epilepsy, I was happy because it’s something I can live with. There’s still lots of things I can do.’
Murray, 44, currently works as a manager in Parcelforce Worldwide’s HR department and has been instrumental in establishing an equality and inclusion support group for staff to discuss their health conditions and disabilities.
‘It’s about learning about your condition and if you’re not embarrassed to, providing that safety net so that people are able to talk to their colleagues and friends about their condition. It’s about demonstrating what good looks like.’
However, he says there’s still a huge lack of understanding surrounding the condition, which became evident when he needed to claim financial aid.
After an assessment that he describes as ‘discriminatory’, the 44-year-old was refused Personal Independence Payment (PIP) in 2017 and embarked on a relentless battle to get his financial aid reinstated.
‘The assessor claimed I was safe to use kitchen knives and cook on my own, even though medically I’m not able to,’ Murray explains. ‘I’ve already proven that I’ve got the condition and I had it proven by my neurologist and caregivers, but it was as if I was being told I had epilepsy one moment and then I didn’t the next.’
It took two years for Murray’s claim to be eventually upheld at an appeal tribunal in 2019. Then, the Department for Work and Pensions took away his payments again in March 2023, despite providing evidence of his seizures.
Fitted with a Subcutaneous EEG implant (SubQ) in December 2021, Murray discovered that the frequency of his seizures were far greater than he thought and used the findings in his claim.
‘The device has proven that I have more seizures than I notice,’ he explains. ‘But I’m still judged on a system that measures us against people with physical disabilities. We need a category that puts us in a neurological bracket.’
In response to Murray’s claims, a spokesperson for the Department of Work and Pensions (DWP) told Metro: ‘We support millions of people with health conditions and disabilities every year and our priority is that they receive a supportive, compassionate service.
‘All our disability assessors are qualified health professionals and PIP entitlement is assessed on the needs arising from a health condition or disability, rather than the condition itself. Anyone who disagrees with a decision has the right to a review.’
For Rebekah Smith, deputy CEO of Epilepsy Action, it is vital that people feel comfortable when speaking about epilepsy.
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‘We should be passing on the message that for the majority of people, epilepsy is not a problem,’ she tells Metro.
‘The problem is the way that people perceive it, and it is crucial we continue to raise awareness around how we deal with and support those with the condition.’
The Epilepsy Society is calling for the NHS to provide free dental repairs to teeth damaged by seizures. Find out more about their Fix It 4 Free campaign here.
This article was originally published August 17, 2024
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