Who do I tell?

One of the most surprising aspects of being epileptic is how it changes one's relationships with other people. Personality, temperament, rationale, and emotional response seem like the unchanging intangibles - but that's not true. Some of these things can be altered by a life-changing experience. For instance, my temperament and rationale have all too obviously changed over the last year. My emotional responses are harder to control and my self-worth has been put into question way too many times for my personality to NOT be affected.

But - its not just about how I respond to life now that I know I'm epileptic. Other people can easily change their approach to me upon realizing that I'm one of those convulsing, foaming-at-the-mouth epileptics, too. In fact, one major lesson that I've learned, without really choosing to, is that some people don't know how to handle the fact that I'm epileptic. This doesn't necessarily include my inner circle, i.e, friends and family, although relationships with my inner circle have experienced some changes since last June - but mostly in a good way. Rather, I'm talking about potential employers, acquaintances, strangers, and busy-bodies. Allow me to elaborate so you'll know why this is relevant.

There's an art to disclosure. When I started interviewing for jobs after my seizures, I openly admitted to two potential employers that I didn't go to Africa because I had a seizure and was hospitalized. Bad idea. I got a blank stare and a nod, and no follow-up phone call. Of course, I probably wasn't the best fit for the job - in no way am I accusing these men of discriminating against me (that would be AWFUL - wouldn't it? Although I can't say they weren't discriminating...). However, the point is, although epilepsy is apart of who I am - not everyone deserves the honor of knowing that its apart of who I am. At first, though, I wanted everyone I knew to have that honor. That's the kind of person I am. Some people, though, would rather keep this kind of information to themselves and feel that it's no one else's business. I couldn't agree more. It isn't anyone else's business unless we choose to let it be their business.

Now, back to the art of disclosure. I would've yelled it from the roof tops if it were up to me. I might've held a sign up on a street corner about epilepsy awareness, that said something like, "I'm epileptic, but I'm just like you." I mean, seriously - I look pretty normal. I'm your average height and weight for a woman of my age. I don't have two noses, nor do my eyes cross involuntarily (not to diss the cross-eyed croud - really). The art of disclosure becomes a matter of two questions:
Who do I tell? and
How do I tell them?
Is it important for future employers to find out during a first interview that you're epileptic? NO.
Is it important for old acquaintances and friends who run into you at the supermarket to hear about your seizures? NO.
Should you bring it up in conversation whenever possible? NO.
Should you miss a day of work because you're epileptic and decide you might have a seizure if you go? MAYBE but typically, NO. Epilepsy shouldn't be used as a crutch if you don't want to do something.
Is it important to tell your doctor? YES!
Is it important to tell your family? YES!
Is it important to teach your dog about first aid for seizures in case she's the only one home to save you while you have a grand mal? SURE, why not? I did!

The art of disclosure varies from person to person - but determining who to tell is often one of the more difficult things. Like I said, at first, I told everyone. As time goes by, though, I've learned that not everyone needs to know. Unfortunately, images of epilepsy that have been passed down over thousands of years remain etched in people's minds. It's not always the fault of the person who has the prejudice - although most people choose to remain ignorant about things that don't directly affect them. That's why I didn't know that I could've been having seizures all those years - after all, I only thought that seizures involved convulsions and drool. I didn't think seizures affected me directly, but they did.

In today's world, we hope that outdated theories about epilepsy would be eliminated, but that's not true. In fact, many cultures still believe that seizures occur because of the devil. I'm not poking fun - because there are many things that people in all different cultures will blame on the devil. You're familiar with the line, "The devil made me do it?" A majority of the world believes in a spiritual realm, and demon possession - although its become a subject of fascination - is a common diagnosis for a seizure. A friend of mine reminded me of this recently. The Bible describes certain incidents of the demon possessed which share similarities with a seizure: convulsions, eyes rolled back, isolation (epileptics have been declared mentally ill and abandoned by their families since the beginning of time). It's no wonder why people might try and treat a seizure with an exorcism.

And although its easy to laugh at - epilepsy has also been blamed on masturbation. I'm not sure why. If one is epileptic, then they must masturbate too much. Seems a bit illogical, but only because I have access to information with the click of a button. Most people in the world don't - which makes these theories not so illogical. After all, there has to be an explanation for everything - and if the facts aren't readily available, people will create their own explanations for the unexplainable. Everyone does this: old, young, educated, uneducated, religious, apathetic - no one is immune. So, for whatever theories people conjure up for epilepsy or any other health condition, there also needs to be a certain amount of grace given to them if they don't have access to the facts. If they do have access to the facts, though, and choose to ignore them - well, then they're doing themselves and their epileptic neighboor a disservice.

Perhaps its silly for me to tell a believer in the masturbation theory that neurons in the brain misfire and cause seizures as a result of a mysterious act of nature on certain individuals. Perhaps they'd call me crazy if I told them that caffeine triggered seizures rather than masturbation. It all depends on what a person chooses to believe based on the evidence they accept.

This is why its OK to keep the truth from certain people. You never know what they've already chosen to believe about epilepsy.

Maybe I didn't get that job because the boss didn't want me masturbating all the time on the clock. You can laugh at that...really, I mean, its a joke, I promise.

So...moving on. The other question one has to ask besides who? is how? How do you tell someone that you're epileptic? Do you call them up and tell them over the phone? Do you invite them to a private dinner? Do you mention it casually in conversation while in a public place? Do you say it so fast that they can't ask questions and then walk away before they try? I'd advise you to choose a way to tell a person based on your relationship with them. Instead of announcing to them stoically, "I have epilepsy and therefore you should understand that I've suffered," share the story with them. If its an old friend whom I haven't seen in awhile, I may or may not share with them, depending on the time and place. If I want this person to know me well and share in my life in a significant way, however; its important to let them know this fact about me. I try to understand that people may be afraid to ask questions, or they may be the victim of misinformation, and I use my story as a teaching experience for them. It can be fulfilling to give a testimony about epilepsy that changes a person's perspective on the condition.

People who truly care about you will want to know. Those who don't truly care about you won't want to know, although they may be nosey anyway. Believe me, I've seen people who care and people who don't, and there's a difference. Whether they care or not, though, they still need to have their eyes opened, and although its OK to refrain from answering questions, its also good to share truth with an interested person. I almost HAD to tell people about the epilepsy because I was fundraising for a missionary journey and had sent out dozens of letter informing people about the trip. So, people would've wondered why I didn't go to Africa, and I shared with many of them about the diagnosis. If its in passing conversation, I try to tell people as matter-of-factly as I possibly can, and reassure them that I'm fine, now. People may think that I'm not fine just because I have epilepsy - but often its out of love that they do. How you tell people is up to you - and whether or not you do is also up to you and no one else. Never feel pressured.

Anyway, epilepsy will always be apart of me. I'm not ashamed of it.