This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
My topic this time around has been stigma, I had a long hard think about an area that epilepsy still needs more awareness and then I came up with this… Epilepsy & Employment.
I could talk about this issue for hours, I have been fortunate that I have had some brilliant managers who are very understanding but I have also been the other side of the fence and seen how badly epilepsy in the workplace can be handled. For those of who follow me on Facebook you will know I recently made the choice to return to work having left my last employer following having Noah. It was a huge step for me to regain some independence and confidence, I am fortunate that my manager is very understanding and I was also very honest about my life as it is now and so far that seems to have paid off and everything is going brilliantly. But like I say I haven’t always been that fortunate, so I asked others for their experiences and this is what I have come back with…
I want to say thank you to everybody who came forward and shared their experiences, I can’t change anything by sharing all of this but I can highlight some of the issues and hopefully make people think a little.
My first response came from a lady whos daughter was training to be a teaching assistant, this involved going into a nursery and working with children, the college informed the nursery and everything seemed fine, they appeared to have no issue with her epilepsy. The worker had some jerk seizures but not many it was more a case of she was struggling with the side effects of medication (sickness, hair loss, tremors). The staff at the nursery would often remark how the worker looked unwell, it was shortly after this they called her in and told her she was a “risk to the children.” She was very upset and sent on her way in an awful state, the nursery were aware that one of the workers triggers was stress and yet they still let her leave and nobody called to check if she had gotten home safely. This left a young girl ashamed and embarrassed by her condition. I have also had response from America where a lady was dismissed from her job as a special Ed teacher due to absences for neurological tests and doctors appointments, she contacted a lawyer but was told there was no point in fighting it.
I have been told stories of one person with epilepsy being asked every day “are you coming in tomorrow?” – they had only ever been off sick twice, this was no more or less than everybody else and yet they were bullied for their condition. Another also told of how they had a seizure at work and came to with people laughing, they managed to get themselves to the bathroom and sat on the floor, nobody came to check on them. Equally another told of how when she called in sick they would make comments such as “well you could try to come in. You’re really letting the team down” both of these people reported crying before going into work every day.
I was also told of how one person was at a company and everything was fine until they got new management. She was told that due to the nature of my condition, “you will never progress far in any career but I’m “really good at cleaning.” She left the manager’s office in shock and went on sick leave for work related stress, returning with her resignation in hand.
One man contacted me, he had been seizure free for 15 years but more recently he has had five seizures in one year and has been fired because of this. There are studies out there that support that people with uncontrolled epilepsy are more likely to be unemployed. I have been contacted by people who are facing disciplinary action and one of the recommendations it not to have a seizure and be off sick in the next 6 months. I wished it was this simple – epilepsy wouldn’t exist if it was! The second problem that was highlighted with such a statement is that there are over 40 types of seizures. Then there comes comments that employers have made to staff with epilepsy, one person was told “Take multivitamins that will stop it”, others reported that they were compared to other staff with epilepsy. One manager asked their staff if they took the medication. When they replied yes and why the response was “well why isn’t it working” like it was a case of taking paracetamol for headache, others have reported that they have had to continuously justify themselves despite circumstances being explained more than once. From the emails I have received there is a very real lack of awareness and understanding, and this needs to be addressed.
Before you are even employed it can be suggested that there is a stigma towards epilepsy. One lady told me that whilst at university she couldn’t get a job but her twin sister could, the application forms were the same except she declared she had epilepsy, she then found as soon as she didn’t declare it she got a job. Whilst writing this I have done a lot of reading and there are studies out there that have been done anonymously and it shows that employers are wary of hiring someone with epilepsy, but again more a lack of understanding as to what they could/would be able to do. I understand this, that from the point of view that people with epilepsy don’t like being compared because you cant compare the condition, it is hard for employers to know what they can expect, they cant guess the way in which having epilepsy will affect the person and therefore may presume the worst?
Whilst reading around this subject it is said that people with epilepsy face a higher rate of unemployment for various reasons such as fewer opportunities, stigma and potential risks to name just a few, and as highlighted in the study I mentioned above employers are wary of hiring those with epilepsy even if they don’t directly say so. The stigma around employing someone with epilepsy could be broken down with a little bit more awareness of the condition. I obviously can only speak for myself but I just wanted to get on with my job, I never want special treatment but sometimes there were and will be instances where I may be in a position that I do need help or time off, but that does not make me any less capable of doing my job.
For more information on epilepsy in the work place: https://www.epilepsy.org.uk/info/employment/legal-matters
NEXT UP: Be sure to check out the next post tomorrow at livingwellwithepilepsy.comfor more on Epilepsy Awareness. For the full scheduleof bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.