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.’
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 a business administration 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.’
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.
Saba Mahmood was diagnosed with epilepsy when she was 11, but admits she regularly downplayed the condition to prioritise the care of her brother who lives with cerebral palsy.
‘I always shrugged it off as a kid,’ she tells Metro.co.uk. ‘Even though I used to have tonic clonic seizures, I only had them once or twice a year.’
‘My brother’s condition was a big deal and I would help look after him a lot. At the time, my mum was at home and I could manage my seizures, without necessarily realising the effects of the day-to-day symptoms.’
However, when the 26-year-old’s epilepsy began to increase in severity, it dramatically impacted her independence. Although able to move out, Saba is unable to live alone due to the continued risks posed by her epilepsy, and rents a flat close to the family home.
‘It was always my dream to move back to Sheffield where I’m originally from, but it’s just too dangerous for me to live far away on my own because I just never know when I’m going to have a seizure,’ she explains.
But it’s not just her independence impacted, her career has taken a hit too.
Even though she trained and qualified as a dental nurse before being promoted to manager of a nearby practice, Saba’s seizures forced her to abandon a successful career.
‘I work in a hospital bereavement office, but I’m qualified in dentistry and I know I would get paid more, so it’s a difficult battle,’ she says.
‘When I worked as a dentist, I was catching two buses a day just to get to work. Once, I had a really bad seizure while waiting for my next bus. I fell face first; I couldn’t even get my words out before I collapsed to the floor. It was out of the blue which made me realise just how much epilepsy was affecting me.
‘I’ve tried working from home as well to cut down costs, but then I discovered I can’t look at a screen for too long because it would bring on auras and migraines.’
Thankfully, Saba’s new employer is accommodating of her condition. Although the majority of her work is structured in a way that avoids her seizure triggers, she feels there is still a level of misunderstanding around her requirements.
‘I’ve always found it very hard to explain this to work, because looking at me I’m a young, fit and healthy person, but there’s this hidden condition I experience,’ she adds.
For Saba – whose front teeth were so badly damaged by a seizure that she was forced to have them replaced – epilepsy doesn’t just impact employment, but the ability to forge and maintain relationships.
‘‘I may have to cancel plans at the last minute due to a sudden flare up,’ she adds. ‘And no matter how hard I explain to my family at times, they don’t always understand – apart from my mum and partner who know what my condition involves.’
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.co.uk. ‘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.
‘Tthe 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 last year, 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.
‘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.’
‘I’ve found that you can live with epilepsy and laugh’
Comedian Jake Lambert, 33, has been living with epilepsy for 14 years. Here, Jake – who supports big acts including Michael McIntyre and Jack Dee, while headlining his own sell-out shows – explains why he uses his platform to talk about the condition:
‘I was diagnosed with epilepsy after having a seizure in a fitting room. I was lucky I found out when I did because I had grown up with my older sister who also has the condition and she could be out of action from anything from a day to a week.
‘I remember not long after I was diagnosed thinking that I might be stalled for a while, but I knew that life wouldn’t be over. I also had the ignorance of being a university student where you think nothing can stop you, which definitely helped.
‘Although everything remained fairly normal, one of my biggest struggles was coming to terms with not being able to drive because I relied on my car for work and university. Straight away, I worried that I’d be letting other people down and that I wouldn’t be able to stick to long-term plans.
‘Epilepsy brought with it a lot of loneliness, especially when it came to going out. But my friends were brilliant, and I had so much support. I always remember on nights out that people would offer to take me home if I began to feel unwell.
‘I didn’t talk about epilepsy for the first few years of stand-up because I just didn’t know how to make the topic funny. But I started to after lockdown. I remember mentioning it on the stage for the first time to see how the crowd reacted, and I could sense the mood in the audience shift to relief when they heard me joking.
‘After one show a mother came up to me after and told me her son had just been diagnosed and that a lot of what I’d said really struck a chord, so I’ve found that you can live with epilepsy and laugh.
‘There’s so much about the condition that people still don’t know about. I’ve had people who have epilepsy come up to me after my shows and tell me that they didn’t know a particular fact about the condition, and I do feel that it shouldn’t really be my place to educate people.
‘But I like to think my comedy helps to normalise the condition for other people and increases awareness of what it is like to have seizures. It makes the whole thing feel far less scary.
‘It’s so natural to feel as though your life is over with an epilepsy diagnosis, but it is possible to turn things around. No matter who you are, it is vital to remember that things do tend to get better in the end.’
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.
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