I’ve been struggling with the notion of living
“authentically.” Every place you look
you find people espousing the importance of being authentic. We are supposed to be our true selves… but we
also need to exist within the world as it is.
I’d contend that no one – with or without epilepsy – who has
impulse control truly can live happily and be 100% authentic. Sure.
You should be true to your values, but perhaps not always to your
emotions. No matter how much you
disagree with your boss, it’s probably not a good idea always to say no to
him/her. If you’re naturally a glass
half empty person, you may want to try to change your point of view to glass
half full. (You’ll be happier and so
will the people around you.) Similarly,
if you don’t like how you look, telling people other than your closest friends
probably will become boorish. The
examples are endless.
And what about epilepsy and authenticity? How much are you going to tell others about
your condition and its challenges? This
can get tricky. On the one hand, the labels
“person with epilepsy” and “epileptic” don’t bear the stigma in developed and
many third world countries they once did.
The Millennials, in particular, aren’t as judgmental as some older
generations. After all, few of them will
abide being judged themselves. In short,
many people with epilepsy who used to cover their condition can live more
authentically, coming out of hiding.
On the other hand, there’s often still the aversion to being
around someone with epilepsy when they have a seizure – and the subsequent
distancing of others can make we with epilepsy feel stigmatized. This is where what I’d not call authenticity,
exactly, but rather a simple briefing comes in.
When you let people know you have epilepsy, also give them a quick
“here’s what you do if I have a seizure.”
It may not end all of their fears, but it could make them more
comfortable with being around you. Not
knowing what to do when someone is in trouble feels plain awful.
Then there’s the workplace.
Almost all of us with epilepsy want to know if we should let hiring
managers know before or after we’re hired that we have epilepsy. Legally, you don’t need to reveal your
condition, though you may want to depending on the job and/or the people
interviewing you. (I hope it goes
without saying that you shouldn’t be applying for the position if you know that
the severity of your epilepsy keep you from fulfilling your duties in your
job.) Awhile after you’re hired, though,
I suggest you tell your manager, who will need to make the choice about whether
or not to tell the others who work around you.
Just like everyone, they’ll feel best if they know what to do should you
have a seizure. I’ve made the mistake of
not doing this, and I feel I still owe an apology to those colleagues who were
taken by frightening surprise.)
And what about authenticity and our emotions elicited by
epilepsy? You, no doubt, have challenges
others can’t even imagine. I’ve felt
them, read about them on others’ blogs, talked to many people like me with
epilepsy and their parents, and feel that every bit of pain is real. Nonetheless, you may want to think before telling
everyone about your hardships. It’s that
“glass half empty/glass half full” thing at play again. If you need an understanding community to
whom to vent regularly, I strongly endorse www.myepilepsyteam.com,” a site where
you build online friendships and have discussions with people like you.
Living authentically is a tricky challenge. To me, it’s like looking through a
kaleidoscope. A seemingly simple scene
becomes a shifting pattern of refracted lights and darks. In the end, you simply have to apply good
sense to wind your way through it.
Comments