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Why People Are Surprised When I Tell Them I Have Epilepsy

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For most of my adult life, I’ve kept epilepsy in my closet like an ugly coat. I didn’t want to cloak myself, so to speak, in what I used to see as a shameful disorder.

Of course, it’s far from that, though some others may react in shameful ways when they hear about it. I decided to step into the open about my condition a little over two years ago, and for the most part, the people I’ve told haven’t let me down.

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Nonetheless, I have to say that to a one, there seems to be an element of surprise manifested in their seemingly taking a moment to reorient themselves to the truth. I’ve lived a fruitful life, with a wonderful marriage, a child (who doesn’t have epilepsy), and I’m successful professionally. I’m generally confident. What I sometimes feel when my meds are a little off, they never see. In their view of the world, I’ve seemed “normal.”

And I’m not unusual. One out of 100 people have epilepsy, but others don’t notice anything different about most of them. Many of these people with epilepsy aren’t telling those without epilepsy that they have the condition. Those who have epilepsy that shows in frequent seizures, brain damage, or the visible disorders that can go hand-in-hand with the condition get labeled as “an epileptic.” While they are among the strongest people I’ve ever met, others don’t necessarily see them that way. It’s not fair. They deserve the respect of all, and then some.
People with “visible” epilepsy don’t represent the majority. Seventy percent of people with epilepsy have controlled their seizures with medications, vagus nerve stimulators and/or responsive neurostimulators. The one big reason the perception remains is because so many of us in this 70 percent don’t admit we have epilepsy. If we did, there would be little surprise when someone has our condition.

The question, then, is how to make us all feel comfortable telling others. It’s kind of a chicken-and-egg situation, unfortunately, but it’s our responsibility to take the first step if we want others to accept us as we are. We have everything to gain from being brave, choosing the right moment to tell others, and making sure we’ve firmly established a positive relationship with that person before we do.

If you’re now hiding your epilepsy, please remember it’s not shameful. You have so much that’s wonderful in your life. And you’ve had to overcome a challenge 99 out of 100 people haven’t. So please take the next step. Make yourself a shining example of many of the people with epilepsy.
Note: I speak in generalities about both people with and without epilepsy. There are many people without epilepsy who fully accept that those of us with it are no different than they. And there are many of us with epilepsy who already are among the brave, speak out, and make a difference in ending the stigma.

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Originally published: March 7, 2017
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