A few days ago, I read a great article in The Atlantic with the delightfully self-explanatory title “Living with Invisible Illness.” This piece of writing has popped into my poor ‘ol maybe-concussed head several times since. (Yep, maybe-concussed, but I don’t really feel like getting into the particulars of the maybe-concussion. What a life, huh?? What a life. /Fake overly dramatic voice.)
Lots of food for my remarkably scattered thoughts. I’ll let you read the article yourself so that you can fully appreciate both how good it is and how little it relates to what follows.
Total aside: did someone say food? I’ve been much, much hungrier than usual for the last month or so, maybe because of a recent med change. As a result of that and the suddenly beautiful weather, it’s been fro-yo central over here. I’ll slow it down when my clothes get tighter. Until then, of all possible side effects, this one ain’t that bad: bring on the frozen dessert. Which, incidentally, they happen to sell at the boutiquey laundromat in my neighbourhood—thank goodness for big city livin’.
I’ve also been more easily distractable than normal, but I guess that’s self-evident.
Anyway, my illnesses tend to remain more or less undetectable until they really-really-really and, generally, all of a sudden aren’t invisible anymore. That is to say, until they’re so glaringly obvious that it’s hard not to wonder how I ever manage to walk the streets without a million curious/shocked/disgusted eyes trained on me.
My brain works in curious ways.
I’m referring in particular to epilepsy—maybe I’ll return to depression and its posse some other time—which is an interesting case so far as “invisible illness” as a concept is concerned: most of the time, it remains “invisible” enough, always bubbling under the surface (thanks, epilepsy, for being such an ever-present pal!) but usually subdued to the point that I’m able to project a calm-ish version of myself to strangers, family, and friends alike.
And then it has its moments, some of them impressively momentous (maybe this shouldn’t surprise me; epilepsy is, after all, a part of who I am, and since an early age, I’ve always given my very best at everything I do, whether an exam or the production of abnormal electrical activity in my brain). Indeed, like a tantrum-throwing toddler, my neurological condition can be pretty darn visible when it wants to be: even absence seizures, characterized by simple staring, can be strikingly conspicuous, embarrassing for me and startling for anyone who happens to be around to witness them.
If absence seizures are upsetting, just imagine the “entertainment value”—yes, I’m kidding, and yes, I’m grossly overusing em dashes and quotation marks—of the full-blown tonic-clonic ones. Luckily, I only remember the aftermath, not the seizures themselves, since my brain’s generous enough to be unconscious for the main event. Small mercies, as “they” say (keeping with the borderline-inappropriate-quotation-marks theme and also adding to the rapidly growing parentheses tally).
Some other observations and reflections to round out this rambling, barely coherent post:
1) The epilepsy-afflicted bit of my brain is most likely to be much-less-than-invisible when I haven’t eaten properly, haven’t slept enough, or have forgotten to take my pills (in other words, when I fail to practice basic self-care, which is something that happens with extreme rarity), but no matter what I do, I can’t seem to convince it that it’s OK to, you know, go away and never come back. Sigh.
2) On the off-chance it’s not clear from the fact that I run a blog based on my experience living with it, I’d like to make clear that I’m not ashamed to be a person with epilepsy. I’m happy that I can make epilepsy more visible through advocacy work and by complaining to those special people in my life who’re lucky enough to be on the receiving end of my lamenting, though that goes without saying. In both of those situations, however, making what’s often an invisible illness visible is my choice, and I do so for a good (?) purpose that isn’t related to an immediate and unavoidable personal health crisis.
3) I occasionally think that it would be easier if my illness were more visible—if more people knew that I have epilepsy and that it’s really, really hard, sometimes debilitating and not just something that I make bad jokes about, etc. etc.—since this liberating tidbit would reduce the expectations placed on me by others and by myself.
But would that reduction in expectations ultimately be beneficial to me, when all’s said and done? Not a rhetorical question. Probably yes, but I’m not entirely sure. For the past few years, I’ve tried my best to pretend that less is wrong than really is, and with spotty results—it’s impossible to hide something that just won’t go away despite my very, very genuine efforts, and the more energy I put into continuing with my life and achieving my professional and personal goals without making enough allowance for this ginormous elephant in the room that wreaks all sorts of neurological havoc, the more it feels the need to remind me that it’s a ginormous elephant in the room that wreaks all sorts of neurological havoc.