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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEpilepsyTeam Member asked a question 💭

I've experienced nothing but blatant discrimination at some point at every job I've had. They are usually very supportive at the beginning but then when I end up NEEDing the accommodations all of a sudden its a problem and I cry wolf. I wish there was more training for HR and education about the fact people can have like 5 months of nothing, I seem normal. But then it's like a relapse of seizures and they assume I'm "abusing the system." as I've been told. What do people do for work? I struggle… read more

July 25
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
The way my work values me gives me suicidal thoughts. I’ve been at the store for over 20 years and teens who just got hired already mean more than I do.

July 30
Hi, this is just a check-in, based on a phrase you mentioned. If you — or anyone else who sees this — is thinking about self-harm, we want to say that you are an important part of this community. No part of this is easy, but there is support that can help. Read more >
A MyEpilepsyTeam Member

I worked at a coffee hut and our safety plan was for me to lay on top of the trash bags of coffee grounds 🤣 def the funniest compromise i had to do...I wasnt able to work the window of the drivethrough at one place...which meant sometimes people from the kitchen would have to cover. i had another employee look at me and say "you need to stop hiring people who cant do Sh**" I need to write a book about all the weird compromises that have to be made just to work as an epileptic

July 30
A MyEpilepsyTeam Member

I agree. The first job didn’t really have anybody watching me so I went in the back to sit down. My second job, I was discriminated from doing a job because he was afraid I might have a seizure and someone would break-in. But the only accommodation they gave me was if I had one, I was allowed to go to the office to sit. The next one they took me out of customer service because a couple people said I was slow. It was hard because nobody was really watching to make sure I was doing it right. But they put me on personal shopper and gave me a foldable chair in case I had one while I was on the floor, which I never did. The last and current jobs try to send me home if I have one. The last one only because she didn’t even want me to hire me but was forced because the owner gave me an offer plus there was no accommodations. The current job they try to send me home because they don’t have any nurses, but yet it’s a place for disabled workers. The only accommodation is that most of my jobs, I’m already sitting down. Most places don’t know what accommodations are and think an epileptic is a liability, as I have been called once, to their company.

July 25
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member, asking for accommodations from your job can be very hard. A lot of businesses don't want to make accommodations for employees. I worked for a business that had issues with a co-worker that had MS. The company thought she was demanding. She passed away two years after she asked.

July 25
MyEpilepsyTeam

What you're describing is unfortunately something many people with epilepsy face, and it's genuinely exhausting and unfair. The unpredictable nature of seizures — months of calm followed by a difficult stretch — is so hard for workplaces to grasp, and being accused of "abusing the system" when you're just trying to manage Show Full Answer

What you're describing is unfortunately something many people with epilepsy face, and it's genuinely exhausting and unfair. The unpredictable nature of seizures — months of calm followed by a difficult stretch — is so hard for workplaces to grasp, and being accused of "abusing the system" when you're just trying to manage your health is deeply hurtful.

You're not alone in this. Many MyEpilepsyTeam members share similar frustrations about workplaces that start supportive but pull back when accommodations are actually needed. Here are some practical steps that may help protect you and strengthen your position at work:

- Get documentation from your neurologist explaining the episodic nature of epilepsy — including that seizure-free periods are normal and don't mean the condition has resolved
- Put accommodation requests in writing so there's a paper trail if things change
- Know your rights — in the U.S., the Americans with Disabilities Act (ADA) requires employers with 15+ employees to provide reasonable accommodations
- Consult an employment attorney or disability rights organization if you feel your rights are being violated
- Ask your doctor to communicate directly with HR about how accommodations support your ability to work effectively Some MyEpilepsyTeam members have found that being upfront early — and framing epilepsy clearly and confidently — helps set expectations before a seizure episode occurs, rather than after. It doesn't fix a bad workplace culture, but it can reduce the "surprise" factor that sometimes triggers skepticism.

Remote or flexible work arrangements have also helped some people, as they reduce the pressure of in-person performance during recovery periods. It may be worth exploring roles where flexibility is built in from the start.

July 25

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