There was a time in my life when I didn’t tell anyone, including my employers, about my epilepsy diagnosis. I don’t recommend that --- there’s nothing to be ashamed of!
How Epilepsy Impacts My Employment Journey
I feel grateful that my seizures primarily happen from sleep -- I’ve never had a seizure at work. Seizures have absolutely impacted my work, though.
It takes me about two full days to recover from a grand mal (tonic-clonic) seizure, and I’ve absolutely had to take more time off work than the average employee because of that.
I experience short-term memory loss after a seizure, and I recall having a coworker call me to ask how she could cover my work while I recovered -- I literally couldn’t remember what I had been working on.
After those two days, the physical and mental effects are generally gone, but I feel symptoms of depression for a much longer period. For me, epilepsy and depression are co-occurring conditions.
I’ve also experienced periods where I can’t drive due to epilepsy, and I’m in one of those periods right now. Luckily, I’m currently able to work from home, but I honestly don’t know what I would do if I had to commute to work. I think about that a lot. It’s another reason we need comprehensive public transportation across the country -- not everyone has the ability or means to drive a car.
How I Have Overcome Employment Challenges
I’ve found that it’s very important to disclose my diagnosis to my employer. I’ve only been met with understanding and compassion.
Since I work in politics and public policy, I’m able to speak in a very personal way about the need for comprehensive healthcare reform. My personal experience helps people understand why policy changes are so important.
I spent a long time being fearful of judgement about my condition; that people would think I am not able to effectively do my job due to my epilepsy. That was all in my head.
Additionally, my diagnosis has made it easier for me to set strong boundaries. I cannot and will not sacrifice sleep to do work -- sleep deprivation causes me to have a seizure. No one should sacrifice their health for a job.
When I put my needs in those terms, no one has ever pressured me to do otherwise.
Support for this eJourney story was provided in part by The Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation.
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