Playing Pretend
The one about living with a chronic illness.
I’m an excellent pretender.
Since I was a kid, it’s been one of my superpowers. The ability to pretend everything is fine… even when I’m really, honestly, not so sure.
Growing up with a chronic illness — especially an invisible one — does that. (I’ve written about it a bit in the past, including here, but I have a chronic blood disorder.) At an early age, I realized that our society rewards the people who suck up their battles without complaint, who suffer in silence and make it all seem like a breeze. The more unnoticeable your struggle, the better.
I believed — and honestly, maybe still do — that the more effortless I made it all seem, the more I dug my heels into the dirt and said having a health condition didn’t define me, the better I was at… I don’t even know — life? Like it was proof that I was tough or more well-adapted or something. We applaud the people who make it all seem so uncomplicated, who brush off their hardships and keep their shadows under the bed. And so, for most of my life, I’ve tried to be really good at seeming like dealing with a chronic illness is simple. Easy, even.
But, it’s not.
I’ve started and stopped this essay in my head a thousand times. I’ve thought to myself, “No one wants to hear this. You’ll just sound like you’re whining.” Worried that maybe I’ve already talked too much about this subject as it is, and no one really wants to read about it.
Where I’ve netted out, though, is that maybe someone should talk about it more. Maybe someone else needs to hear it. And maybe I need to let it out.
Living with a chronic illness is exhausting and hard and relentless. It is, at least for me, a constant balancing act, and sometimes akin to trying to catch lightening in a bottle. Having my blood disorder has meant thinking ten steps ahead at all times, preparing for the worst but hoping for the best. Trying not to worry so much that you can’t get out of bed, but worry enough that you stay on top of managing your health so as to not miss anything. It’s understanding deep in your bones that giving up is a luxury.
I sometimes joke I'm an old lady (though I’m in my mid-30s), but really, I’ve had to be an adult my entire life. I’ve known my life expectancy and all the things that can go wrong for about as long as I’ve known my name. There’s a lot that can be said about living with a chronic illness and the lessons you learn along the way, certainly, but one of the main ones is this — you discover very early how to muster the ability to keep going (and usually, as if you’re unfazed). No matter how difficult things get, how bad the news you receive, you figure out a way to bend, not break. To bite your tongue and grit your teeth and keep on going.
That’s an asset in this life, for sure, but sometimes, I wonder if anyone else really sees me — the whole me. Like I’ve done a little too good of a job pretending. I’ve convinced everyone it’s all a piece of cake, that I can handle everything and anything, even when the wave is about to pull me under. I can handle a lot, but in reality, it’s sometimes so very exhausting and lonely in a way that is hard to put into words. No matter how wonderful the people are in your life or how much love you’re surrounded by, or how grateful and resilient and genuinely happy (as I am) that you are. Sometimes it’s still just… a lot. And sometimes, well, it just helps to know someone else sees how hard you’re trying, and how much is on your shoulders — even as you’re trying desperately to keep it hidden.
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*This* has been on my mind for a while now, and I always worry after writing pieces like this that folks will assume I’m sad or that my life is awful, or that I’m in a bad place, mentally. None of that is the case, though — I’m good (seriously). This is just part of the layers of living with a chronic illness. You learn how to bloom and be happy amidst the mess.
Disclaimer: everything shared here is based on my own experience; I would never presume to speak for someone else, never mind the entire chronic/invisible illness community.
Thank you for reading,
Joelle
Thank you for sharing! There are so many nuggets of wisdom in here that we can all learn from.