The Parts You Don't See: What It's Like Living With, Loving, and Fighting Alongside Someone With An Invisible Illness
I have a hard time letting people in,And this includes the people closest to me. Now, that's not meaning to say that I don't tell them what's going on in my life, because I do! I really do, but rather, I shield the parts of me that I worry will scare them into thinking I will, like so many times before, fall.
That I will climb to the top only to come tumbling back down, barreling past where I stood just moments before.
This is what living with an invisible illness feels like, at least to me anyways; not only does it - at times - consume every part of your body and mind, but it also weighs heavily on the lives of the people that care and love for you. The people that look at you with eyes filled with hope, determination, and confusion as to why you aren't getting better. As to why we keep finding ourselves circling back to this very moment again and again. As to why everything we do doesn't seem to work in the way "they" said it would.
So, when I see them looking at me with those eyes, the most rational thing I can think of to do is to hide. Is to smile big and say, "you know, things are a little rough today, but that is ok. We will be ok," because in that moment, it feels like the only thing that will keep us moving forward rather than backwards. That will keep us from questioning whether or not "progress" is being made.
That will keep us running alongside each other, rather than me trailing just ever so slightly behind, desperately wanting to stop and say, "no, you go, I'll be fine right here. Besides, I'm tired anyways..." At times, it feels better this way, and other times, it feels as if I am hiding a huge part of me. A part of me that begs to be set free.
At times, sugarcoating feels more like a lie than anything else.
It's all very complicated, and much of the time I haven't a clue what to do (ok, the majority of the time), and I always find myself weighed down by the feeling that I should be doing more. That no matter how hard I'm trying, it won't ever be enough. That it won't ever be enough to feel secure with where I am - we are - right now.
And when left alone, I am scared. It feels as if my hands shake more, my vision grows fuzzy, words slur and mind turns to anxiety provoking thoughts. And in these moments, I wonder if I will ever feel brave enough to be alone. To sit with myself and to not just think, but believe, "dang, no matter what happens right now I will be ok. No matter what happens, I will be able to take care of myself, because of the love that you give. Because of your determination and hope rubbing off on me."
It's a bit funny you see, I want you here, but I keep finding myself pushing you away, fearful that this is not how you wish to spend your life. Fearful of what the future will hold, for I cannot promise that I will get better. I cannot promise a darn thing, and that kills me. It eats me up inside.
So instead, I tell you that it will be ok, because in the end, no matter the outcome, it will.
We will be ok, even if it's not the 'ok' that we've been planning on. Even if life shifts and I once again fall, I am going to keep getting back up. I am going to keep telling you that you can lean on me just as much as I lean on you. Because you see, this body of mine, it is not fragile. This body of mine is strong and capable of a great many things.
After all, it's brought me (and us) this far hasn't it? It's kept me running right alongside the ones that I love.
I'm not entirely sure how I am going to solve this problem, or if I can, but maybe, just maybe, it's not asking to be solved. Maybe, it's simply asking to be understood. That yes, this is difficult for everyone involved. For the people in the arena and the people cheering them along in the stands; we're all playing our part in this very complicated, unpredictable, and often devastating fight.
We're all doing the best we can in a situation that does not lend itself well to confidence, security, unwavering health, and a predictable outcome, but rather, we're doing the best we can amidst a battle that relies primarily on hope, resilience, determination, strength, stubbornness, and love. Lots and lots of love from you, and the people in your life.
So, to everyone who has been fighting alongside me, thank you. Thank you for giving so much, because without you doing just that, facing this disease would feel near to impossible.
Remember, I'll lean on you if you promise to lean on me too, ok?
Let's keep on keepin' on, Chloe