Unemployment, underemployment, frequent job changes, and lack of advancement continue to negatively impact quality of life for people with epilepsy.[1, 2] In fact, employers are less likely to hire an individual with epilepsy than people with any other disability,[3, 4] due partly to assumptions that epilepsy is associated absenteeism, work disruptions, work-related accidents, and increased costs associated with liability and work-related accommodations.[5, 6] Such stigmatization is prevalent and may lead to discrimination, unnecessary job loss,[7, 8] poor psychosocial and vocational outcomes,[9, 10] and decreased quality of life for this population.
In the career I’ve chosen, many people fail; many people quit; many people break and many people are broken. It’s incredibly tough. And these are just the normal people.
Imagine what it’s like for the “freaks” like me?
Last week I was told that I should quit my career because I wasn’t going to make it, because of my epilepsy. Before Christmas, my health was extremely dire and although I was doing the work to a good standard, my level of absence due to lack of seizure control has not made a great impression as a dependable employee.
Now, thankfully due to Zonegran, I’m no longer having seizures everyday which means that I’m not having to take so many days off, however, it seems that the ghost of Christmas past is pinned to my tail. I was told that I should consider quitting not because I wasn’t good at my job – they assured me that I am very much so – but because my epilepsy was causing concerns. Unfortunately this is not the first time that an employer has said this to me.
For somebody who actually wants to work, this is destructive to my mental health, my soul and my confidence.
Work and sickness have always been major issues for me, especially before I was diagnosed. I still remember the days subsequent to graduating from university, when like most graduates I failed to fall into a career or any kind of job relevant to my degree, and I found myself working in hell… Topshop in Oxford Circus. The hours on my feet were endless, the lights and humidity were intense bitches, and the playlists were fucking annoying… oh god those fucking playlists! During those days, I was having nocturnal seizures and partial complex seizures almost daily, which at the time were misdiagnosed as night terrors and migraines. I was taking only God knows how many micrograms of solpadol for the migraines, and so I was constantly high and constantly tired.
And constantly off sick.
In pretty much every place of employment I’ve been in, I’ve been terrorised by management for my sickness absence levels. One manager treated me so badly, my seizures become so uncontrollable that I ended up in hospital and then unable to work for months. And until I gain seizure control, with the right medication and lifestyle, I’ll be stuck in this cycle of high levels of absences from work and feelings of persecution.
I’ve been put through ridiculously stressfully lengthy sickness reviews and occupational health interviews which never really seem to come to a solution to support me in my role as an employee…. They only highlight the issues making me an expensive burden to the establishment.
Sometimes it’s easier to just look for another job… and then the whole cycle begins again.
I’m also made to feel like I’m deliberately making myself sick; very frequently they don’t even believe that you’re sick in the first place and you begin to go insane enough to wish you would have a seizure right there in front of their “sickness review panel” just for the evidence.
I probably shouldn’t be putting this out there, however somebody needs to and I feel like I do need to speak out about this.
Last year I spoke live on BBC London during their discussion on employment and Epilepsy during Epilepsy Awareness Week, because over 60% of sufferers feel the need to lie about and conceal their condition, just in order to get their foot in the door of employment. I spoke briefly but also boldly because I feel that due to lack of awareness and understanding, employers are openly discriminating against us.
Employment is about survival of the fittest, and in some sectors – particularly the one I’m working in, I was told that the vast majority of employees take two days off sick in their entire careers.
I probably took that off in my first month alone, therefore making probably me one of the weakest members of staff on the payroll.
If and when I ever gain seizure control, you can bet your arse that I won’t be disclosing my Epilepsy to employers, just like the rest of the 60 plus per cent in the UK, because I don’t want to be seen as weak. Plus I’m not not legally required to disclose my “disability” to employers and therefore it cannot be used against me.
Fortunately I’m not ill enough not to work, however it seems that I’m too sick to hold down a job and at the moment there doesn’t seem to be many options in between…