5 Steps to Telling Others about Your Epilepsy!!!

CAVEAT: The following is necessarily simplistic. I acknowledge that having epilepsy and life’s experiences are different for everyone. Nonetheless, I hope there may be a few nuggets useful for you as you enter unknown territory.

 Here’s the thing. There are many of us who want to be free of the burden of hiding our epilepsy but are afraid to do so because of prejudices. If your condition isn’t already obvious by the life your epilepsy forces you to live, you owe it to yourself to step out and shed the light on your epilepsy – in doing so, joining in the fight to end the stigma. There are a few ways that have worked for me, and maybe they could help you, too:

1)  Accept yourself.   I know. This can be the hardest step of all. For example, I lived for years feeling that I was a weirdo, “the other.” Somehow, I thought that I didn’t deserve anything I got and any successes were just examples of my fraud of a life. I was in hiding with misplaced shame and pretty successful at it, too (except when I had my grand mals!). Slowly, though, what was a self-image quagmire changed into anger about the situation. I understood why the stigma existed, but what I thought about myself because of it made me furious. Anger was my catalyst. I somehow stopped letting epilepsy define me and decided the best way to cement my newly found feelings was to talk about epilepsy and look for opportunities to educate others.

2)  Look for the right time.  Play it by ear, but you may want to wait to work epilepsy into the conversation until you know someone has a well established positive impression of you. Just as you don’t want to define yourself by the condition, you don’t want others to see you and think of epilepsy first. They should think of you as you.

3)  The right time is not during a job interview!  Many people, including I, suggest you don’t tell anyone during a job interview unless your condition will keep you from performing the function fully. For unfair reasons, doing so may keep you from getting the job. You’re not required to disclose it by law and the company isn’t allowed to ask you about it. However, after starting working and establishing a good reputation, tell your boss and HR. Reinforce that it shouldn’t affect your ability to meet your responsibilities and give them guidelines for what to do if you have a seizure. This is a safety measure for you as much as anything else. For these safety reasons and consideration of the potential shock to coworkers of various types of unanticipated seizures, you may want to tell your boss on your first day of work instead. Like everything, it’s up to you.

4)  Try not to make too big a deal of it.  Remember, you’re not only coming out of hiding, but also, even inadvertently, helping end the stigma by your example. Try to work it into a conversation rather than sitting people down to talk about it. For instance, I’ve found opportunities when others ask what my Medic-Alert bracelet is for or when epilepsy or another condition comes up. Also, in my case, I was able to sneak it in when chatting about avoiding alcohol, caffeine, etc. while I was pregnant. I simply added the conundrum of whether or not I should continue to take meds during my pregnancy. Jessica Keenan Smith, founder of Living Well with Epilepsy, has a good line when introducing the topic: “Oh, you didn’t know I have epilepsy?” Make it as casual as possible. Don’t let it appear to define you.

5)  Help diminish fear.  Many believe stigma comes from ignorance about what someone with epilepsy “looks like” and what to do when someone has a seizure. They freeze up and are afraid, which only reinforces their often subconsciously wanting to distance themselves physically from you.  You, one of the good guys to them, may now represent what it looks like in their minds. As for what they should do if you were to have a seizure, you might say something like “I’m always surprised by how many of the smartest people don’t know what to do when someone has a seizure. I mean, do you?” There’s your chance to make sure they get the information they need to help lessen their fears. And if they say they know, get them to tell you what it is they’ve learned and, if need be, gently give them a brief education on it.

And, of course, encourage others to speak up! The more of us who bring our epilepsy to light, the easier it will be to do so yourself and the closer we’ll come to ending the stigma. These are just a few guidelines that have worked for me. Please share yours and comment below or share them directly with me - zettera.az@gmail.com. I’d like to include them in my twitter feed @shedlightepilepsy and help you get the word out!