After years of having to tell people that I have epilepsy, and waiting with bated breath for their response, I have learned a few things about timing and expectations. Here are a few tips on how and when to disclose you have epilepsy for different groups in your life:

1. For employers/coworkers. First of all, you do not have to say that you have epilepsy during your job interview. It is also illegal for someone to ask if you have any disabilities during an interview. Please do not apply for any jobs that will put you in danger if you have a seizure. (You can decide this for yourself based on your seizure control.)

I found it best to tell my employers and co-workers after I secured the position, and generally within the first week or so. This also allows me to teach them seizure first aid before I have a seizure, should I ever have one at work. Again, you do NOT have to tell the person interviewing you that you have epilepsy, and, in most situations, the ADA protects you from being fired because you have a disability. Epilepsy counts as a disability.

2. For friends. If you are newly diagnosed with epilepsy, you may be a bit embarrassed to tell your peers. That’s okay. I get it. I hid the fact that I had to take medication the whole time that I was a teenager because who wants to be “different” for epilepsy when you don’t have to be? My seizures were totally under control, and all I had to do was take one pill in the morning (before school) and one in the evening. So, if my friends did know, it never came up.

If your seizures are completely controlled by meds, you probably have a choice of who to tell and who not to tell when it comes to friends and peers in general. I recommend telling your closest friends for a few reasons: (1) There’s always a chance that you could have a seizure, and they need to know seizure first aid, and (2) being diagnosed with epilepsy can be a big deal and a good friend will be someone that you can lean on emotionally. If your seizures are not well controlled, you may have to tell a few more people, especially the group that you hang out with the most. They will definitely need to know what to do in case of a seizure.

3. Teachers/Professors. If your seizures are not well controlled, these people will need to know. This can be done in several ways. (1) Depending on your age, your parents can/will take care of it. (2) You can send a professor or teacher an email with a quick run-down of what to expect and what to do in case of a seizure with a link to a seizure first aid website. Links are below in “Resources.” (3) You can tell them in person. This is best done when they are not busy or distracted by anything. Make an appointment during their office hours. Set up a time between classes. Make sure they have time to listen fully and ask any questions. And, of course, depending on your age, you can also refer them to your parents.

4. New Roomates. When I moved to law school, my first year I lived with five roommates in one giant house. The second day that I moved in I sat them all down on one of our couches, told them I had epilepsy, what to do if I had a seizure (at the time I was having tonic-clonic seizures) and asked them if they had any questions. They didn’t, and the conversation was a lot less painful than I thought it would be. The reaction was basically, “Okay. Cool. Beer?” If you move in with new roommates, tell them sooner rather than later. I promise you that they will care less than you think they will.

5. Romantic Partners. This is where it gets tricky. I’ve heard of all sorts of responses from people who told the people they were involved with about their epilepsy. But, I will tell you this: if the person doesn’t take it well or breaks up with you and you think it was related to seeing you have a seizure or the fact that you have epilepsy, they don’t deserve you. You are worthy of love, and unconditional love. Tell them when you are comfortable - maybe it’s the first time you hang out, maybe it’s a few weeks in, but I suggest that you do it early for two reasons: (1) If your seizures aren’t well controlled (are we seeing a theme here?), they need to know what to do if you have one, and (2) you need to know their reaction. Don’t waste your time with someone who can’t deal with the fact that you have a seizure disorder. They aren’t worth it.

Telling someone you have epilepsy can be scary - it’s not much talked about in the public - but you can change that. Remember that having a seizure disorder is nothing to be ashamed of (although I know that it can feel like it is), you cannot get fired for it, and anyone worth having in your life will see you as more than someone with epilepsy. They will see you as the awesome person you are.

Resources

Seizure First Aid from the Epilepsy Foundation: https://www.epilepsy.com/tools-resources/forms-resources/first-aid

Seizure First Aid from the CDC (also has links to mental health for people with seizures): https://www.cdc.gov/epilepsy/about/first-aid.htm