Home » Epilepsy Blog » Lifestyle + Epilepsy » Work » Leila’s Ideas: Stigma in the Workplace

Leila’s Ideas: Stigma in the Workplace

Do I tell my employer about my epilepsy?

Epilepsy StigmaThis post kicks off the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Congratulations! You just scored a new position in a great company, one that you can see yourself staying with and being fulfilled. Your co-workers are wonderful and you anticipate becoming fast friends with some of them. If that wasn’t enough, you get along with your boss which makes you even more excited about this opportunity. But still, there’s a looming question in your mind: do I tell my employer about my epilepsy?

The Law

This dilemma is not uncommon and is not limited to epilepsy. Any person who has an “invisible illness” may find themselves asking this question. So, how do you answer it? To start off you are not legally required, in the United States, to disclose your Epilepsy to your employer. During the application and interview process, your future employer may not ask you about your diagnosis. The employer may ask whether you can complete certain tasks, like operating machinery or driving. If you require certain accommodations to complete your job requirements, your employer is then allowed to ask additional questions. But, if your epilepsy is generally controlled and your functioning is not impaired by it, your employer does not have to know about your condition.

Should I Say Anything?

It might be wise to disclose your epilepsy. The most obvious reason is safety. Even individuals with well controlled epilepsy may have breakthrough seizures. If this happens at work, it is important that at least one person around you is aware of your diagnosis and has an action plan. This ensures your safety and those around you. Sometimes medications cause side effects that could impact the work environment. If you are changing medications or altering the dosage, telling your boss could be helpful. That way, there is an understandable explanation for a change in behavior at work. It also may help build rapport with your boss.

But what about stigma?

Perhaps you’re afraid that your employer will stigmatize you once you disclose your diagnosis. I have spoken with a few employers while writing this piece, and all of them agree that your job speaks much louder than your diagnosis. The biggest concern they had was safety. None of them, even when directly asked, had reservations about employing someone with a seizure disorder. As long as the job can be done safely, that is the most important thing.

How should I tell them?

The employers I spoke with didn’t express a specific way of revealing a diagnosis, just that it might be helpful information. I have done it in the past and have always done it very matter-of-factly. I sit down with my boss and explain that I have a diagnosis of Epilepsy that is well controlled with medication. I usually let him/her know what to do in the event I do have a seizure, thus creating an action plan. I also allow my boss to ask me questions. While this is not necessary, I want to answer any questions or concerns there are so we are both comfortable and confident moving forward. And, if a question were to come up that I was not comfortable with, I wouldn’t have to answer it. I’m providing the information on my own, not because I am required to under the law.

Most often, it is usually your decision whether you want to disclose your medical information to your employer. There are significant benefits to doing so. Stigma may be a legitimate concern but having a job is more about showing off your abilities. If you do that, then the diagnosis takes a back seat to all you accomplish.

For more information

More information can be found at the following website: U.S. Equal Employment Opportunity Commission

Passing the Baton

NEXT UP: Be sure to check out tomorrows post at Education and Epilepsy Support for more on Epilepsy Stigma.

For the full Epilepsy Blog Relay schedule visit: https://livingwellwithepilepsy.com/epilepsy-blog-relay-2015

Follow Leila Shields:
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.

13 Responses

  1. mel
    | Reply

    hi my name is Mel i have epilepsy since i was 8 yrs old i work for Home Depot in Maryland now I have a book coming out this year call living with epilepsy.

    • Victoria
      | Reply

      Mel, where can I get your book?

  2. Whitney P.
    | Reply

    Thank you for speaking on this topic! When I first shared with my employer about my epilepsy I was extremely nervous. But I knew it was for my own safety to let them know. I was potentially saving my own life by teaching seizure first aid. It actually encouraged others to come forward and know there was someone they could trust in case something happened.

    This really gave me the reassurance that we should not stop what we are doing out of fear what others may think about our diagnosis. So inspiring!

    • Leila Zorzie
      | Reply

      Wow, what a powerful story! You were able to be an advocate for yourself and others by disclosing your epilepsy. That’s wonderful! It definitely can be scary to reveal the diagnosis but hiding it only gives stigma more power! It’s kind of fun to be able to use our Epilepsy for good things. 🙂

  3. Soo Ihm
    | Reply

    How do you handle an interview? Is there any time you would disclose your epilepsy before you were offered the job? Any thoughts on that?

    I’ll see you on the 7th at my blog!

    • Leila Zorzie
      | Reply

      That’s a good question! All the professionals I’ve spoken with recommend disclosing it after the interview. I was told to do so after you were hired on, not during any part of the interview process. That being said, if you need an accommodation to complete tasks for your job then you will probably have to disclose it. Employers usually ask why you need accommodations, which they are allowed to do. If that’s not the case for you, there’s no reason to disclose it during an interview. You’re focusing on your abilities, the reasons you are the best fit for the job!

      I hope that answers your question! I look forward to reading your blog! 🙂

  4. Victoria
    | Reply

    I have had Epilepsy since I was a child. I hid my illness for most of my 20’s from many bosses. My last full-time job was in 2005. I was an Assistant VP of a web hosting company and my job consisted of mostly computer work. I was well controlled at the time until I had a grand mal that landed me in the hospital. After a return to work a day later I had a small absence seizure at my desk. A week following I had an emergency appendectomy. In fear of losing my job I returned to work 3 days after surgery only to be told I was no longer needed. I have not been well controlled since. I now manage about 10 hours a week (on a good week) working for a Podiatrist with a heart of gold. I have had more than one seizure in his office, and he is in contact with my doctors in case of an emergency. He knows my meds make me tired all the time and that some days are worse than others. He is very understanding. I wish there were more people like him in the world. I would love to have my old life back, but I’m afraid the damage is done, my memory loss has gotten worse and my activity has increased. I miss the old me, but my husband says “You’re still the cool chick I married”. That keeps me going strong for a cure!

    • Leila Zorzie
      | Reply

      The podiatrist you work with sounds wonderful! This world needs more understanding people in it. I wish you didn’t have such a poor experience at your last job. Did you speak with anyone before you left about why you were no longer needed? The events certainly sound like they were related and that’s not fair. I’m curious: do you wish you had told your previous bosses? It’s such a tricky situation to be in, and everyone’s experiences are different. It sounds like you have a wonderful support in your husband; that’s one thing to be very thankful for! 🙂 Someday, hopefully sooner rather than later, we will have a cure!


  5. Claudette H.
    | Reply

    i am an educator. At the beginning of the school year the school nurse will tell us that she has a health form for us to complete. She explains that any info is voluntary and confidential. I always complete the form. I also explain to her how long I’ve been seizure free, my medication, and give her names of a couple of people for emergency contact purposes. I’ve never had a problem. My main concern is should I have a seizure in the classroom in front of the kids. I don’t want it to freak them out.

    • mel
      | Reply

      yes you do so if they see you have a seizure they know what to

    • Leila Zorzie
      | Reply

      How old are your students? I also am an educator, so I understand that fear. One idea may be to do a presentation on seizures, either done by you or the school nurse. It could be a presentation of information, how to react, and help the person, etc. You wouldn’t have to tell the students that you have seizures but present it as more of an informational presentation. That way, the kids are prepared if anyone has a seizure in their presence–whether it is you, a family member, or a friend. I hope this helps! I’m so glad to hear you have someone you can trust at school to give your information.


  6. angie
    | Reply

    My daughter began having seizures and was diagnosed with epilepsy at age 19, as a college freshman. She had just begun a new job at a popular, name brand, clothing store, and her first 2 seizures occurred at work. Prior to her diagnosis she was working about 20 hours per week. After her diagnosis, she was scheduled 1, 4 hour shift and 1 on-call shift every 2 weeks. She finally quit, and found a different job. I didn’t think she should quit, and see how long they would continue their illegal behavior, but she was dealing with so much with her new diagnosis and didn’t want to deal with their games.

    • Leila Zorzie
      | Reply

      I hope your daughter has been doing well since her diagnosis! It’s probably difficult to try and manage a new life at college while managing epilepsy as well.
      I’m so sorry to hear that the company she was working for treated her so poorly. Did she talk to anyone about it? We know they cannot drop her hours based on her diagnosis; it would be intriguing to hear what their excuse was for doing so. It’s so sad to hear that these things still go on; we really have to guard ourselves with knowledge to overcome them. Hopefully her new job treats her much better!


Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.