We can make it work (Epilepsy Today, September 2019)

Last issue, we explored the barriers that people with epilepsy have in finding and holding down a job. Here, we look at three different case studies from people who are juggling epilepsy with their busy working lives.

Daniel
Football performance analyst
Daniel, 29, lives in Acton, London and works as a performance analyst at Watford Football Club. He was seven when he was diagnosed with epilepsy following his first seizure.

“I remember my first seizure clearly – I woke up feeling dizzy, so I went to the kitchen for some water. I managed to get my cup and turn on the tap, then that was it. The next thing I remember was waking up in A&E at St Thomas Hospital.

“It took a few more seizures, brain scans, CT scans and EEGs before I was diagnosed with temporal lobe epilepsy. I was told I had a grey area with dead cells which was the epicentre of my epilepsy.”

Daniel has both focal (focal onset) seizures and secondary generalised (focal to bilateral) tonic-clonic seizures. He takes Tegretol Retard, Gabapentin and Fycompa, though his seizures are not yet under control.

“I used to have three to four seizures a day – now I have one every two or three months. Due to the higher dose of meds I take at night, I have tiredness in the evening and the occasional slurred speech. Sometimes I have a short temper but that is manageable.”

And naturally, Daniel’s diagnosis did have an effect on his friendships and pursuits when he was younger.

“I felt like a normal kid before, but when I was diagnosed, I shied away from doing things like bike rides and swimming. I was going through things that others weren’t.

“But I was also lucky, as I had a great support network, where my family and friends encouraged me to come out
and do things. Also, they were very understanding, where some days I’d feel up for things and other days I wouldn’t. So, they would arrange for another occasion where I’m feeling good which was great for my confidence.”

With this confidence, Daniel had dreams of becoming a professional footballer, but unfortunately his epilepsy made his career choice difficult.

“It was something I was really interested in, but I was having seizures on the field, so I was told to stop. It was devastating.”

But despite this career setback, he soon discovered other ways of staying in the beautiful game.

“My friends and family helped and encouraged me to complete my football coaching qualifications and I started
coaching at a local grassroots team, so I was still involved in football. In 2010 I decided to go to university and study Sports Science and Coaching.”

One of Daniel’s course modules was on Performance analysis, which sparked a passion within him, and he decided to pursue a career in this field. He signed up to extra courses to immerse himself in the subject, and started working freelance for grassroots teams to gain practical experience.

Once he graduated from university, he started contacting football clubs to offer his expertise. Watford FC was the first club to bite, offering Daniel a role as a voluntary intern, and following this he was given a full-time position. He
told the club of his epilepsy, and the organisation was only too willing to help accommodate.

“They have a care plan in place if I have a seizure at work, and I can get a couple of days off or more if needed to recover. I’ll also get checked over by their medical team, which is great. I’m lucky as due to the industry I work in, we have an on-site doctor, so I guess I’m in a safe environment to have a seizure.”

Daniel says he’s always been able to be transparent about his epilepsy for job applications and interviews. “I have to be upfront for my own safety, in case of seizures. In all the jobs I’ve had, they knew about my epilepsy – they were great about it and supported me well with time off to recover if I needed.”

Interestingly, it’s Daniel’s willingness to be frank about his condition which helps employers engage with and de-stigmatise his epilepsy. “I think it’s because I am so open and honest about my epilepsy, it makes it easier to get
the help and support I need. It gave me the confidence to talk about it with my current employers, and I had the chance to educate them.”

Linda
Freelance crotchet artist
Linda lives in Carlisle and runs her own business making and selling crocheted collectibles.

Her epilepsy diagnosis came when she was 14, with her first seizures occurring aged nine. “In between there was a lot of uncertainty whether it was epilepsy or not. They eventually caught it after an emergency four-hour EEG video telemetry session.

"I don’t remember my first seizure, but I remember how scared I was and how I couldn’t understand what was happening to me. Especially as everyone thought I was doing it for attention and would tell me I was upsetting my mum.”

Linda was diagnosed with frontal lobe epilepsy. As well as her epilepsy, Linda has ‘ticks’ such as clapping, clearing her throat repeatedly and moving her neck.

She takes oxcarbazepine twice daily, but her seizures are not under control, and they occur most evenings and sometimes during the day. As a result, Linda is less likely to take part in evening activities due to the risk of seizure. This, along with the lengthy diagnosis process, has taken its toll on Linda’s confidence over the years.

When she was younger, Linda’s mother took her to help at a nursery, and by the time she was 14 she was offered a job during the holidays.

“I just took to it naturally – children don’t judge you like adults and I found I was able to be myself without worry of judgment. I enjoyed being part of their learning experience.”

However, one day the nursery had to close due to funding, and finding subsequent nursery work hasn’t been
easy for Linda.

“I’ve found over the years if I put my condition on the form I don’t get an interview, whereas if I don’t, I do
– it could be a coincidence, but because of this I started leaving it off. Then in the interview I would disclose it so I could explain in person and play it down so as not to cause alarm.”

When she did land a job, she quickly found they weren’t understanding of her epilepsy.

“In one particular role they became frustrated with my hospital appointments – the deputy manager became particularly angry with me about it. They couldn’t understand that my condition fluctuated and the more stress they put on me about my seizures, the worse they became. I ended up leaving because my health was more important to me.”

It’s clear that in many workplaces, Linda has had to fight against the stigma and misconceptions of epilepsy, not just in managers, but fellow colleagues.

“I feel they don’t understand my type of epilepsy – they immediately think of tonic- clonic seizures and panic. I’ve struggled with getting time off for appointments, and when I was going to them in a different city, they didn’t understand why I needed the full day off. They also didn’t appreciate it if I needed to be off following a seizure
during the night. My seizures would often be worse as I’d push myself to go in as I was worried about losing my job.”

After being in and out of part-time work for years, Linda decided enough was enough.

“I decided not to look for jobs anymore. I struggled to fit work around my health and getting my daughter to school – I felt like I was no longer the best parent I felt I could be, and my health was suffering. After my third child I decided to become self-employed so I could work around my epilepsy and my kids.”

Linda now sells her crotchet pieces through a shop, and she’s had a few repeat customers commission her for her work all over the country. And while embracing a freelance lifestyle isn’t without its challenges, Linda enjoys having the flexibility of being her own boss.

“I find the bookkeeping side of it stressful, as maths isn’t my strong point. But I make sure to keep everything I sell documented. Sometimes I also find myself worrying if I’ve had a slower month. After two years of it I’m still getting to grips with marketing my products, but it still feels slow going sometimes. But I enjoy having time to work around my health and family, and turning something I love into a job. I love the fact something I’ve made gives
someone joy!”

Following her experiences in work, she feels that much needs to be done to dispel the myths and educate
employers around supporting people with epilepsy.

“I think there should be more training in regards to different seizures; how they affect someone’s life and the medication and appointments that come with that. Workplaces should have a degree of flexibility when it comes to appointments – it’s not a case of someone avoiding work. There also needs to be less fear around epilepsy. If
you need to have the morning off after a night-time seizure, it might make things difficult for the employer, but it shouldn’t make you unemployable.”

Gemma
Caravan park owner
Gemma lives in Leeds and was 26 when she was diagnosed with epilepsy in 2009.

“On the day of my first seizure, we’d been backpacking around Australia and celebrating the new year. I was going down for lunch in the hotel, and without any warning, the next thing I knew, was waking up with blood all over the floor and two paramedics beside me. At the time they said it was probably down to jetlag or scuba diving and that it was a one-off seizure.”

When Gemma returned to the UK, she felt things still didn’t feel right, but the doctors couldn’t do anything to help without a second seizure. A couple of months later, the seizures returned. She had an MRI and eventually she was diagnosed with epilepsy. At the time, Gemma experienced tonic-clonic seizures along with focal seizures every few days.

“They didn’t find a cause for my epilepsy really – it was either from my scuba diving, an arachnoid cyst that they found when I had a CT scan in Australia, or it just happened. The cyst was also on my temporal lobe, so it affected
my memory.”

For her epilepsy, Gemma takes Lamictal (lamotrigine) and Lyrica (pregabalin), and for now, her seizures are controlled. Gemma wanted to set up her own business, and she saved up by working in a hotel, pub, market stall and caravan parks.

“I’m really into local tourism, which has been part of our family business, so I’ve got the knowledge and the experience.”

It was this passion for tourism that led Gemma to buy her first business in 2014, a caravan park in Bardsey, Leeds. Since then, she’s also made improvements to the site, building a house and further developing the park.

“It’s a lot more stressful owning your own business but a lot more rewarding. I definitely prefer being self-employed. There are benefits, like if I need  time off for appointments.”

However, dealing with customers, long hours, living at work without much time off, plus competition from other caravan parks didn’t make owning a business easy. And the stress only served to make Gemma’s health even worse.

“Shortly after buying the park, I had another seizure and lost my driving licence again. Then I managed to regain it and lost it again for a second time since buying the park. It was virtually impossible to run the business, because there’s no bus route or anything here – I had to use taxis and asked friends and family for lifts.”

Despite this, things are looking up for Gemma’s business, and she’s back to being able to drive.

“I’ve worked on my own up until this point – now the business is well-established and I can afford to take on extra staff.”

She’s now going on two years without a seizure, and she says she’s never been tempted with a regular nine to five job.

“The best thing about being my own boss is that I can work at my own speed. With my memory being so bad, it would be really difficult to get a job.”

She even encourages others with epilepsy to take the plunge in owning their own business.

“Just do it – but maybe have a back-up plan and a good support network to help you out if you need it.”

Editor’s comment
No matter what our career ambitions are, working in a safe and supported environment should be a right, not a privilege. If we’re able to work, it’s important that we are able to find and keep a job that helps us to get the most
out of it.

From the Institute for Employment Studies research, it’s clear that a lot of work still needs to be done to dispel the myths around epilepsy. Many with epilepsy don’t feel comfortable talking about their epilepsy in front of a potential employer.

What doesn’t help is that many employers harbour a lot of fear and applied stigma to epilepsy. It’s a tough job market out there already without employers tossing applications in the bin if an epilepsy condition is disclosed on paper.

A popular option seems to be that people with epilepsy tend to leave their condition off their application form. Once their ‘foot is in the door’, usually at the interview stage, that’s when it’s best to disclose, so they can explain their condition face-to-face.

It’s an understandably nervy situation. However, like interviews themselves, the more times you go through it, the easier it gets.

The recruitment stage is the employer’s chance to see whether you’d be a good fit for their company. However, it’s also your chance to see if a company is a good fit for you. Remember that employers shouldn’t use your epilepsy as a reason not to give you a job, unless they have good reason, for example for health and safety.

Fire your passion
Confucius once said: “Choose a job you love, and you will never have to work a day in your life”. Admittedly, that’s lot easier said than done, but it’s all about discovering a passion that you can turn into a profession. Once you do, that passion is going to burn bright and make you a stand-out candidate in any employer’s eyes.

What did you love doing as a child? What hobbies did you have, before life got in the way? Ask your family and friends for advice. On the other hand, what jobs do you hate doing? Eliminating these from the mix might help you find your calling. You can maximise your chances further.

Do your research, follow experts in your field, and immerse yourself in job sites and job fairs. It takes a lot of energy and motivation, and while many of your applications won’t bear fruit – you only need one successful lead to bite. If you don’t have relevant experience or qualifications, be aware some careers let you start on entry level jobs. You could even volunteer to gain working experience, while apprenticeships let you earn money while learning on the job.

Supporting you
With a very small number of exceptions, there shouldn’t be any job that people with epilepsy can’t do. With this in
mind, Epilepsy Action is working to help educate employers about epilepsy as well as the reasonable adjustments that can be made.

In 2020 we’re planning to launch online tools for employers to support people with epilepsy in the workplace. Don’t forget you can use the “Epilepsy and you” online self-management tool, to help you live better with epilepsy and it includes a section on employment.

Epilepsy Action also works to ensure that people with epilepsy are considered in regulations and policies around work and employment.

You can further explore our guide to finding employment here: www.epilepsy.org.uk/info/employment