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When I Told My Employers About My Epilepsy for the First Time

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I had a bad episode with my epilepsy at work. It started before I even left for work. I woke up feeling great for the first time weeks. Of course, I continued my typical schedule and didn’t push myself. Before I left for work though, I began to feel strange. Now I feel strange every once in a while so I thought it would pass, but it only got worse as I traveled to work. I still have my license since I don’t have grand mal seizures and only absence, and I personally think I have partial, but my neurologist hasn’t addressed them yet. As I began to work, everything went downhill and my employers didn’t know at the time that I am an epileptic.

What happened was that my mental state changed immediately. I became anxious, fearful, I was struggling to talk and think straight, forgetting basic work tasks, staring spells, and I was terrified that I was going to fall into my first grand mal because I haven’t had an episode like that. Not one where I literally thought I was going to go into a grand mal. I knew I needed to go home, but I was terrified to talk to my employer about what was going on. I didn’t want any stigma or be treated differently.

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Eventually, I got the courage as I realized that I wasn’t getting better. They were understanding but questioned the validity of driving myself home. I said I would be fine, thinking I was catching it early enough, and they let me go. I made it home safely but disoriented. It took a lot of mental and physical energy to stay focused on the drive back, but thinking back on it, I shouldn’t have driven myself back.

The next few days were my recovery days with small seizures and even a night seizure, but I am doing better now. Looking back now, I did have a possible aura a few days before my episode, which was what I call “brain zaps” or my weird headaches where I get this sudden zap of pain throughout one section or half of my head.

I went back to work a few days later and I had to face the inevitable questions from my boss. I have two since it is a father-son operated business. The son owns the store and the father works part-time there so I had to face the son since he left before I left on that day. Fortunately, he entered the conversation asking about my condition and what protocols to take when I have one, with no questioning of ability to work, which I am relieved about because facing chronic illness and work is tough. And to those of you wondering, I have emergency contacts in place so I am not allowed to drive myself when I have an episode like the one I mentioned before. My family nicely scolded me and I asked my boss to not let me drive. Since then, I decided if I feel strange I will call in or make sure someone is available to drive me so I have plans in place.

I am fortunate enough to have bosses who are understanding and don’t dismiss me for having a chronic illness, but that is not the case with everyone. I waited to tell them until it was absolutely necessary because of my fears, but I probably should have said something before so they knew what to do when I did have that episode. Whether or not you know your bosses well, I do recommend letting them in on your epilepsy so a plan can be hatched for whenever you do have a seizure. It is the safest for everyone including yourself because you know that when you are unable to care for yourself that someone else knows what to do even if it is just a coworker who knows.

Getty photo by Jacob Ammentorp Lund

Originally published: April 14, 2019
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