Epilepsy in the Workplace

Hi again! Firstly, thank you so much for the incredible response to the video I did last time with Michael! It means so much! Today I thought I’d take some time to discuss with you lovely people what it can be like having epilepsy at work, and what can help make life easier and safer whilst working. I’m going to try to make this not just personal experience, but also include things that can be helpful for managers to be aware of or have an understanding of if they have an employee with epilepsy.

 I jumped straight from school into work and have only worked for two companies. As you do with any job, I had ups and downs with both. However, in regards to support in the management of my epilepsy I’ve had starkly different experiences.

 

I work in healthcare and have only ever worked in healthcare. However, in my first job my manager made no attempt to understand my epilepsy. The staff I worked with were amazing and asked questions to make sure they knew what to do if I had a seizure, but the managers didn’t make the same effort and I felt the strain of it. I felt like I had to justify myself if I ever called in sick, and I already felt like an inconvenience so that just increased that feeling.

 

Looking back now I realise how naïve it was to not ensure I sat down with my manager and ask for a plan in case I seize and ensure they understood what my epilepsy required at work, what my triggers could be, and how to make things safer if I am feeling unwell. I never hid the fact I had epilepsy but I also never made sure the right questions were asked. My mum worked in the same hospital in a different department and I just hoped she would always be around to help if needed.

 

After a year of working there, my epilepsy took the worst turn it’s ever taken, since my diagnosis. I was taking a lot of time off sick. I think I was off sick more days than I was working for a while. I was anxious, and looking back now possibly depressed as well. But my manager couldn’t understand what was happening. All they really understood was that I was ringing in sick a lot and using the word Epilepsy as my explanation with no real understanding of what that meant. I’d get emails informing me that my Bradford score (a measure of how much time is taken off sick) was too high and I needed to change this?? I’m not entirely sure how I was supposed to do that, but more on that later. There was no attempt to understand why this score was so high. I can remember, my first (and only) return to work interview- I was having too much time off to have one every time- I had to correct my manager from signing the paperwork saying that time off due to my epilepsy was not related to a disability or chronic condition!

 

There seems to be some kind of expectation that I have control over when I seize and that I can do something about it. I don’t know if anyone else has experienced this or something similar, but I sometimes feel like screaming “I don’t schedule my seizures!” I’ve often found myself dealing with the assumption that I have control over my seizures and when they happen. Why wouldn’t you wait until you’re home and safe? If I had the power to schedule my seizures like that, I don’t think I’d schedule any! But it just doesn’t work like that! To an extent, I can make sure I take all of the right medication at the right time, and I can avoid particular triggers like sleep deprivation and low blood sugar. However, this isn’t the complete picture. Even if I follow all of that to the letter, I will still sometimes have seizures.

 

This isn’t the only thing that I’ve found really beneficial letting my managers know, or struggled when they haven’t understood. They should understand how your seizures and epilepsy works, as well as any necessary precautions that might be necessary including making sure that the right people are aware. Things like letting people know if you might need a short break for medications, or if the stress is building and stress is a trigger. All of these types of things are really helpful in keeping an employee with epilepsy safe and so if employers can understand from the beginning it’s really helpful for everyone involved.

When I moved to the second company I worked for, where I still am now, I felt far more supported. I wasn’t well when I started there, but they were patient and understanding. It helped that I was in a different role which meant that there was always other staff with me. This was a really positive change for me. My manager learned how to manage my seizures and taught the rest of the team I was working with as well. When I was employed, I was employed with the knowledge that my seizures were bad at the time and we were working on getting them under control. She still gave me a chance though. This meant my manager was anticipating any amount of time off unwell and worked out my rotas accordingly. This meant that I didn’t feel like a major inconvenience. I knew I couldn’t help it and so did my boss. I enjoyed the lack of judgement, as it was something, I was not at all used to.

 

I was also very fortunate that I followed my mum across to this company, so I felt even safer knowing she was around if something went wrong, was different or I had to be given rescue medication.

 

I’ve worked in multiple teams in the same hospital since then and have always appreciated the support and willingness my co-workers have to help. I’ve had occasional moments which have been a struggle because I can’t always be there or because I couldn’t get up and down the stairs that day etc, but on the whole, all my colleagues (not just in my department) have been very accepting and supportive. If I’ve ever been seizing, they’ve only ever been kind, asking what I need rather than assuming which is really helpful.

 

My epilepsy still affects me at work. I use needles a lot at work, and the times when I have to step back and admit that I can’t do my job just then is always upsetting because I love my job. I feel like I’m putting more strain on the rest of my team but I know that my job isn’t safe when I’m twitching. Needles and jerking limbs don’t mix!

 

As I said earlier, I still have the ups and downs of a job but with the right precautions maintaining a job with epilepsy is possible. Especially with a supportive team behind you and a manager who makes an effort to understand what you need. I have this now, and I’m so grateful to God for the blessings he’s given me in my workplace. He has always made sure I am where I need to be. When things got bad, I was given the ability to move somewhere where I would be looked after. Looking back, I can see the path he had for me and he’s really blessed me with where he’s put me at the moment in terms of my work.