Nearly a million people will suffer an epileptic episode in their lifetime, but misconceptions about epilepsy has meant people are reluctant to disclose their illness to employers. 

For a condition that affects around 800,000 Australians, epilepsy remains one of our least-talked about medical issues – especially in the workplace where most sufferers choose to remain silent about their condition for fear of losing their jobs.

Carol Ireland, CEO and managing director of Epilepsy Action Australia, says that while public awareness of epilepsy is slowly improving, those with the illness face enormous obstacles when trying to embark on a successful career.

“We estimate that about half of all people in Australia with epilepsy are unemployed or underemployed,” she says. “And that figure is consistent across the western world, in countries such as the UK, New Zealand, Canada and the US.”

Ireland says the official number of epilepsy sufferers in Australia is 250,000, but many more people will suffer at least one episode during their lives – pushing that figure closer to the one million mark.

“Epilepsy doesn’t discriminate. It can happen to any one of us,” she says.

While epilepsy can strike at any age, the condition is much more prevalent among children and adolescents (70 per 100,000 people).

Seizures naturally have a negative impact on a child’s schooling and, consequently, their chances of finding full-time employment later in life.

“We have some lovely clients between the ages of 17 and 25 who have not been able to get employment,” Ireland says. “They are delightful and intelligent young people. Sadly, unemployment is a common issue in that age group. We would really like more intervention at schools for children with epilepsy so they can keep up with their peers.”

Celebrity revelation

“Many epileptics still regard the workplace as a hostile environment, preferring to keep their condition hidden from their employers.”

– Carol Ireland, CEO and managing director of Epilepsy Action Australia

In 2014 actor Hugo Weaving went public about his life-long battle with epilepsy. “I was diagnosed as epileptic when I was 13 and had seizures once a year until my 40s. Then they just stopped. With every fit, my last thought was always: ‘I’m dying’,” he told the Guardian Australia.

While such disclosures by celebrities and sports people help to raise public awareness about the condition, many sufferers are still reluctant to disclose their condition when they apply for a new position; others fear that disclosure might affect their chances of promotion.

According to Ireland, Australian employers and HR professionals vary widely in their responses to epilepsy – some are supportive and proactive, but many remain deeply cautious or, in some cases, they are downright hostile.

“It’s a mixed bag. We’ve taken one company to the Human Rights Commission, but other employers have been absolute gems,” she says. “Optus is a prime example. They celebrate our international epilepsy awareness day in November, every year.

“They also include us in their staff development. The John Holland Group, the major construction firm, is another company which has been very proactive in its approach to epilepsy.”

Secret condition

“Australian employers and HR vary widely in their responses to epilepsy – some are supportive and proactive, but many remain deeply cautious.”

– Carol Ireland, CEO and managing director of Epilepsy Action Australia

Given this uneven employment picture it is not surprising that so many people with epilepsy make the decision to keep their condition secret, but as Ireland explains, non-disclosure poses another set of issues – both for the employer and employee.

“Is it going to be an issue if I do have a seizure in the workplace? Is there going to be someone there who can help me?” she says. “Some people have gone decades without having a seizure and then have a breakthrough seizure at work.”

The picture is further muddied because there is no legal requirement for workers to disclose that they suffer from epilepsy – unless they are applying for specific at-risk jobs such as airline pilots and bus drivers.

“The fact is many people choose to remain silent,” says Ireland. Dealing with epilepsy in the workplace is also hampered by the complex nature of the condition itself which is notoriously difficult to diagnose, can wax and wane throughout a lifetime and manifests itself in a wide variety of different ways.

“Almost everyone you meet knows someone with epilepsy, but there are 40 to 45 different types of seizures and epilepsy syndromes,” according to Ireland.

Indeed, the most common type of incident experienced by epileptics is known as a focal seizure during which the person, and those around them, may be unaware that anything unusual is happening. A number of high-profile sports people, including soccer player Paul Wade and rugby league star Wally Lewis, went undiagnosed until their seizures were recorded on television footage.

“The person will still appear to be conscious but they will start making strange repetitive movements,” Ireland says. “They are actually having a seizure. This might happen to a child sitting at their desk and no-one will even notice.”

Those who suffer from milder forms of epilepsy or whose seizures are infrequent (some people go for years between incidents) live with the constant fear that the condition will return, imposing a lifetime of stress and worry about exposure in the workplace – with a negative impact on their future.

Tony Greig’s experience

Commentators often cite the example of the late Tony Greig, a former England cricket captain and much-loved commentator for Channel 9, as someone who successfully ‘overcame’ epilepsy, but this is far from the case.

Ireland says that Greig, who was a member of the Epilepsy Action Australia board for 19 years and a vocal advocate for fellow sufferers, followed a strict regime in order to deal with his condition.

“Tony bumped his head on the dashboard of a car when he was 12. By the time he was 14 he was diagnosed with epilepsy and lived with that for the rest of his life,” she says. “Epilepsy caused him difficulties on a daily basis. He had to really watch things like late nights, alcohol and stress. These are all triggers. So if you can manage your triggers you are less likely to have seizures.”

Five years after his death, Tony Greig continues to be an inspiration for many people with epilepsy – in part because he was so public about his condition.

“We talk to people about portraying a positive attitude about their epilepsy, being honest about it but not dwelling on it too much,” says Ireland.

Despite improvements in diagnosis, early detection and treatment regimes over recent years, many epileptics still regard the workplace as a hostile environment, preferring to keep their condition hidden from their employers and fellow workers.

By doing so they must live with the added burden of guilt and the stress of being found out – causing further shame and humiliation.