People living with epilepsy in the UK are facing discrimination when looking for work, and in the workplace, due to a lack of public understanding around the condition. With many affected feeling they have to hide their diagnosis during interviews and from colleagues and employers.
A survey* of 2000 Britons as part of their “If I told you…” campaign which has revealed common misconceptions around the condition and uncovered some shocking truths around the barriers people with epilepsy face when looking for work.
Nearly a quarter (23%) of people said they worry about health and safety risks when hiring someone with epilepsy, and 27% believe the condition could impact people’s ability to perform certain tasks or jobs. Almost 4 in 10 (39%) of those surveyed said a common assumption about people with epilepsy would be that they can’t handle work or responsibilities. As a result of this stigma a staggering 60% of the epilepsy community say they have experienced unequal treatment or discrimination at work*.
With 7% of people admitting they’d be scared to be alone with a colleague with epilepsy in case they had a fit and 22% saying their reaction to a colleague disclosing an epilepsy diagnosis would be concern for their safety at work, the charity is calling on the British public to educate themselves about the condition and what to do if someone has a seizure. They want to help break down the stigma surrounding it and allow people with epilepsy to safely disclose their condition in the workplace.
Portia Hibbert is 33 from Bristol. She’s recently been adjusting to a major medication change, which has had a knock-on effect on her brain function, especially memory and processing, something that has had an impact on her work capabilities, alongside her core triggers of stress and fatigue.
She says: “Up until recently, my epilepsy has been manageable and not impacted my abilities too much. But a few years ago I noticed my processing power and memory was becoming slower. Since then, I have felt these areas worsen.”
Portia has had to go on a prolonged absence from work due to the medication change, which has impacted her mental health, and she says she is on an “emotional journey to accept the worst case scenario” as well as grieving her old memory and capabilities.
She says that while her employer is understanding, she worries about not being able to give concrete answers on when she will be able to return to work.
She says: “The brain is so unknown and we all react differently. I don’t have a broken arm that will be better in 8 weeks, I have a faulty brain which impacts my whole body and is unpredictable even to me.
“It can be hard to stand up for myself when I know that my brain has depleted abilities, I know that I was capable of more previously, but I don’t know what I am capable of right now or whether I will remain on reduced ability forever.”
“Everyone with a disability is capable of adding to a team and though these capabilities may change, support and understanding is key to discovering where we shine. It serves no-one to make someone feel incapable”
This data reveals a huge lack of awareness across the country of what epilepsy looks like, how it can affect people differently and the normality of the lives epileptics are able to lead. This misinformation contributes to the stigma and pushes many people with epilepsy to isolation, causing mental health repercussions. A massive 87% of people with epilepsy report experiencing anxiety, depression and isolation, on top of the challenges they already face managing their condition
Rebekah Smith, chief executive at Epilepsy Action, said: “We want to shift the conversation from fear to understanding, from avoidance to action. This data tells us there is still so much work to do to make this happen. Too many people are still uncomfortable with epilepsy – even if it was to affect a potential partner, a friend, or a colleague.
www.epilepsy.org.uk/if-i-told-you
*Charity Epilepsy Action
