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What's Really Happening When We Feel Stigmatized By Epilepsy?

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To carry on, writers need a passion. Ending the stigma against epilepsy is mine. And I have good news: Based on the comments and ages of dozens of people, I’m detecting increasingly greater self-acceptance and less prejudice against epilepsy among Millennials than in other age groups. Unfortunately, there are other factors that affect our feeling stigmatized, and I believe that together, we can figure out how to minimize them.

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What Stigma Feels Like

We can be stigmatized when we feel we are less than others. This can take the form of feeling that we’re not as good as others because of our condition, or have something we think we need to apologize for, as irrational as it may be. Also, we can feel others are spurning us in one way or another — which may be real or imagined.

Prejudice vs. Fear

And here lies the problem. Even though prejudice against epilepsy still lives, it is dwindling in most regions. I believe we often are being feared, not disdained. Others might not, in fact, be looking down on us at all, but that doesn’t mean they necessarily will want to be near us when a seizure hits. It can stem from their sense of helplessness in not knowing what to do. But seeing a seizure, let’s face it, can be scary at first. As my mother would say, “It’s just not that attractive, Dear Heart.”

Of course, it depends on what kind of syndrome you have, but most seizures across the spectrum can be frightening to those who haven’t witnessed them multiple times before. So even if in their minds, the two of you may be just as close as ever, they suddenly may appear to be remote. You might have more difficulty getting a hold of them or perhaps you’re not invited out or to parties as often. You feel stigmatized, but it may not be because they look down on you, but because of fear.

In part, educating others can solve this problem. Those who don’t know what to do can often be taught. However, even if they know how many people have epilepsy or other facts about our challenges, they may still be afraid.

Stigma and the Way You Tell Friends

Another factor is the way we reveal our epilepsy. I’m blessed with having highly controlled epilepsy, and I could hide it without safety issues coming into play. Most are not as lucky as I. This caveat said, I’ve had the most success when I’ve managed to work it into the conversation casually after having developed a positive relationship with a person. In other words, I believe it’s important to not make too big a deal about it, if possible. After all, it doesn’t define you.

In truth, of course, it is a big deal, and the conversation may devolve into a serious one, as the person likely will be taken unawares and be, at minimum, concerned. Slog your way through it, never apologizing or letting on that you might feel less of a human being — you aren’t! Your full, thriving life hasn’t been cut off by your epilepsy, so it’s possible they may not see you any differently than they did before you told them.

I believe that to do this with the power of authenticity, you must have come to accept yourself, never seeing yourself as less than others or being apologetic for your epilepsy. And there’s your biggest challenge.

Attacking Stigmatizing Fear

Then there’s that general fear that can feel like prejudice. That’s where we all need to pull together to figure it out. From what I can tell, beyond teaching others what to do if you have a seizure, we don’t yet have the answer. There are many sites about stigma, including my blog, where you could share your knowledge and experiences. Let’s put our collective thoughts together to figure this out.

Just think how many lives we might save.

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Originally published: December 29, 2016
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