To carry on, bloggers need a passion. Ending the stigma against epilepsy is mine. After talking with many sufferers, I’ve found increasingly greater self-acceptance and less prejudice against epilepsy among Millennials than in other age groups (if interested in details, see my last post). Unfortunately, there are other factors that affect our feeling stigmatized, and together we can figure out how to minimize them.
What Stigma Feels Like
We feel stigmatized when we feel that 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 that we need to apologize for, as irrational as it may be. Also, we can feel others are spurning us in one way or another – something that may be real or imagined.
Stigma vs. Fear
And here lies the problem. 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. Yes, it can stem from their sense of helplessness in not knowing what to do. But also seeing one, let’s face it, can be scary. As my mother would say, “it’s just not that attractive, Dear Heart.” Of course, this depends on what kind of syndrome you have, but most across the spectrum can be frightening to those who haven’t witnessed them multiple times before. In their minds, the two of you may be just as close as ever, but they may behave more remotely. You might have more difficulty getting ahold of them or perhaps you’re not invited out or to parties as often. You feel stigmatized, and it may not be because they look down on you, but because of fear.
In part, educating them can solve this problem. Those who don’t know what to do can easily 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 graced 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 the person. In other words, 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, at best, be concerned. Slug your way through it, never apologizing or letting on that you might feel less of a human being (remember; you aren't!!!). To them, your full, thriving life hasn’t been cut off by your epilepsy. It’s possible they may not see you any differently than they did before you told them.
To do this with the power of authenticity, of course, 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. Please comment and let me know what you think. I make my pledge to gather insights from you and others, reporting back in the years to come.
Onward!!
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