Epilepsy: the spectre in my career
Fearful it might impede my career, I kept my epilepsy a secret. But it doesn’t have to be this way…
EXCLUSIVE | 3 MIN READ | EPILEPSY AWARENESS WEEK
I’m on the cold metal floor of a bus. There’s a metallic tang in my mouth and a woman kneeling beside me, her hand placed gently on my side. As the fog in my brain begins to clear, I realise she’s an off-duty nurse. There are paramedics too, creating a barrier between me and the grumbling commuters who’ve been ejected from the bus.
Then it hits me. I’ve had an epileptic fit on my commute and not only do I feel grim, but I’m late for work. I sit up, slowly, and within a few minutes, I’m calling my boss to explain what’s happened.
I’ve worked for her for two years and this is the first time I’ve told her about my condition. It’s a difficult, awkward, incoherent conversation.
That was over a decade ago, but throughout my career as a news and features journalist, I’ve rarely told employers about my condition.
I haven’t hidden it from them, and I’m not ashamed. But epilepsy - a central nervous system disorder affecting one in 100 people in the UK - is often misunderstood.
Hard truths
Today marks the start of National Epilepsy Week and campaign groups are promoting the message #EpilepsyIsMoreThanSeizures and I couldn’t be more supportive of this year’s focus.
People with epilepsy are less likely to be employed than people with any other disability. The general public find seizures frightening and many believe epilepsy is all flashing lights and convulsions.
But it’s much more than this stereotype, affecting the physical wellbeing, mental health, and career prospects of the 600,000 Brits who live with it. Epilepsy doesn’t discriminate by age, gender or race.
On average, those with the condition die eight years earlier than those without. It’s also common for people with epilepsy to suffer depression, and isolation. Alarmingly, we’re twice as likely to die by suicide than those without the condition.
Epilepsy can carry a heavy toll on your career too. Throughout mine, there have been many times I haven’t shared my status with employers because I didn't want them look at me differently. I didn't want people to think I wasn't up to the job.
But now I work for myself and I want to tell my story.
The diagnosis
At 19, a series of blood tests and brain scans revealed I have temporal lobe epilepsy. Despite common misconceptions about flashing lights triggering all people with epilepsy, only three per cent of those with the condition are photosensitive and I’m not one of them.
My diagnosis came when I was at university and my seizures were at their worst, exacerbated by my very typical student lifestyle: bad diet, alcohol, irregular sleep and stress.
My seizures ranged from absence seizures - if you’d sat beside me you might have thought I was daydreaming - to tonic-clonic seizures. They can last from 1-3 minutes, involve muscle stiffness, jerking movements and always rendered me unconscious. Sometimes I injured myself, mostly cuts, bruises or scrapes.
Before graduating in 2012, I was already freelancing or interning at different magazines. Once, I blacked out at my desk. The office was quiet and because of where I was sitting, no one saw it happen.
Working with epilepsy
Still, I was embarrassed, exhausted and needed to go straight home. The editor was understanding and the way I worked didn't change, but we didn't speak about it again. I did not know whether to ask for support.
There were numerous trips to A&E after seizures in my student flat, sometimes alone, sometimes in front of people - a very visible, tangible effect of epilepsy. Another is having to surrender your driver’s licence if you have a seizure. To get it back, you must be seizure-free for 12 months.
I have no qualms with this policy - the consequences of a seizure behind the wheel could be catastrophic.
Reporter Joshua King with football manager Jim McInally. Photo: Joshua King/Lacuna Voices
However, staff reporters are required to drive. Shorthand and a valid driver’s licence appear in almost all journalism job adverts. So when I was in a job interview, trying my damndest to secure the role, it was a big gamble to reveal my ability to drive hung by a thread and could be revoked at any moment.
I’m freelance now, but when I was working on staff as a reporter, the fear I could lose my job was a constant spectre so I kept quiet about my condition and the potential ramifications on my ability to dash out to a breaking news story quicker than reporters on a rival title.
It wasn’t until a particularly hectic day of covering a court case when I accidentally took an overdose of my medication and had to rush to hospital that I told my editor about my condition. Their reaction wasn't at all what I’d been expecting. There was no shock, anger, or even sympathy. It was accepting and professional in a muted way.
I’m under no illusions about how lucky I am, relatively speaking. My condition is controlled by a regimen of anti-epileptic drugs which have kept me seizure-free for eight years. I can work and currently drive. Many are not so lucky.
Employment
Earlier this year, Epilepsy Action found that only 34 per cent of working age people with epilepsy have a job, compared to 53 per cent of people with disabilities generally. For context - more than 80 per cent of the overall working age population were employed before the Covid-19 lockdown started.
What’s more, the Trade Union Congress (TUC) has found people with epilepsy are paid, on average, 11.8 per cent less than non-disabled workers. Not only are we less likely to have a job, but when we do, we earn less than our peers.
While some people with epilepsy are unable to work, many - like me - can with minimal or no reasonable adjustments – a employee’s right enshrined in law under the Equality Act to make sure they are not disadvantaged at work due to a disability, physical or mental health condition.
In the context of epilepsy, adjustments might include staff first-aid training, extra breaks to prevent over-tiredness, a steady routine, specific sickness absence procedures, time off for treatment, and equipment safety measures for those at risk of seizures.
Lack of training
Despite all the steps that can be taken by employers to support people with epilepsy, the Institute for Employment Studies found employers are reluctant to hire us due to safety fears. More than 75% of British workers have received no training on how to support a colleague having a seizure.
Be honest - would you know what to do? It’s not your fault if you don’t. The onus is on employers to provide training and they’re failing.
In my 10 years as a journalist, I’ve rarely told employers about my condition. In hindsight, I wonder if it was the best approach because the burden shouldn’t be on me to adjust. By keeping quiet and trying to cope with the limitations epilepsy can bring in secret, I believe I was taken less seriously by some superiors when my condition suddenly emerged without warning. Thankfully, most showed compassion.
If you have epilepsy (or any health condition/disability for that matter) and you’re wondering how it might impact your working life, my advice to you is this: know your rights.
There are many great resources but the gov.uk site is a good place to start. It gives an overview of the Equality Act, what is considered a disability or long-term health condition, and what reasonable adjustments in the workplace might look like. The TUC also offers great advice, as does Epilepsy Action and the Epilepsy Society.
Then, armed with information, be confident when approaching your employer. Remember, the onus is on them to adjust, not you.
If you’re one of the lucky readers who doesn’t have epilepsy, the chances are someone in your life does. Learning how to help someone mid-seizure will do wonders for the person who comes around confused and embarrassed on the floor of a bus.
Like this article? Please help us commission more like it by donating the cost of a cuppa on Ko-fi. Sharing this article on your social media, and following us on Instagram, Facebook, and Twitter are also a great way to support our independent, self-funded platform.
We encourage debate, but trolls are not welcome. Please read our comments policy before contributing.