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.
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!
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