My epilepsy and work

    By Rachel

    I jumped straight from school into work and have only had two jobs. As with any job, I’ve had ups and downs with both. However, in regard to support for my epilepsy I’ve had starkly different experiences.

    My first job
    I work in healthcare. 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 it made me feel like an inconvenience.

    After a year of working there, my epilepsy took a turn for the worst. 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 saw was that I was ringing in sick a lot and giving epilepsy as my explanation. But there was no real understanding of what that meant. I’d get emails informing that I was taking too much time off and I needed to change it. I wasn’t entirely sure how I was supposed to do that… There was no attempt to understand why I was taking so much time off. I can remember, my first (and only) return to work interview. 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 seemed to be some kind of expectation that I have control over my seizures. 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 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. I can make sure I take my medication at the right time, and I can avoid triggers like sleep deprivation and low blood sugar. However, even if I follow all of that to the letter, I will still sometimes have seizures.

    "Looking back now I realise how naïve I was not to sit down with my manager and explain my epilepsy."

    Looking back now I realise how naïve I was not to sit down with my manager and explain my epilepsy. I should have asked for a plan to be in place in case I had a seizure and ensure they understood how my epilepsy affects me. Things like what my triggers could be, and how to make things as safe as possible. I never hid the fact I had epilepsy but I also didn’t make sure the right questions were asked.

    My second job
    In my second job, where I still am now, I feel far more supported. I wasn’t well when I started, but they were patient and understanding. It helped that the role 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 the rest of the team had training as well.

    When I was offered the job, they employed me with the knowledge that my seizures were bad at the time. My manager planned around me and helped, rather than having unrealistic expectations for what my epilepsy would allow me to do at the time. This meant that I didn’t feel like an inconvenience, which was a relief. I enjoyed the lack of judgement, I wasn’t used to that at all.

    My epilepsy still affects me at work. I use needles at work, and there are times when I have to step back and admit that I can’t do that right now. I find that 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 there are ups and downs in any 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.

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