They can't see your nose and other strange and complicated metaphors about chronic illnesses
This is something that came out of my brian at Starbucks the other day, and I thought I'd share.Â
You know when you’re wearing makeup, and in the back of your mind you’re almost constantly worried that you’ll smudge it somehow without noticing?
Or when you’re wearing that shirt that rides up in a way you don’t like, so you’re self conscious all day, tugging it down?
Or when you’re on your period and you have to constantly reassure yourself that you have supplies and that you almost certainly haven’t bled through your pants?
There’s a lot of “oh, but I thought you couldn’t - - - - -?” to which you sigh and respond “that’s when I was taking - - - -.” Or “only when - - - -.” Or “Yeah but I’m ignoring it shut up.” You find yourself wanting to say ”God, keep up, aren’t I important to you?” But then you realize how unfair that is, because sometimes , aren’t I important to you?” But then you realize how unfair that is, because most of the time you can’t even keep up. You can’t even remember what you’re not supposed to be eating right now, or who your next doctors appointment is with, or if you took your meds this morning, and if you can’t keep it all straight, how can they? It becomes such a massive part of your life that it’s strange when someone doesn’t understand how much it’s changed you, what it’s done. How much planning it takes, how you can’t leave your house for more than a week without at least one syringe, more than an hour without a snack.  It so utterly changes you and your life that you feel like everything should have changed for everyone, and yet some people can’t even tell that you’re different.
               And then there’s the bad days. When all you can think about is that it’ll be like this forever, that you’re permanently broken or defective somehow. This is never going away seems to pump through your veins until you can’t think of anything else and suddenly you can’t even breathe right anymore. You suddenly feel crushed at the thought of getting out of bed. Showering is a literal impossibility, not even to be considered, and getting dressed is a strenuous chore. The waistband of that is too tight, it’s too cold out for that, no bra today, don’t have time to run to the bathroom between things, so not that shirt, maybe this one, is that one long enough to cover my butt? Good. Cause the only clean leggings that don’t send you running to the toilet are the ones with the hole in the butt that you probably should’ve thrown away years ago.
               Putting so much effort into daily tasks makes you oddly and fiercely defensive.  You end up with people staring at you thinking things like “well I had to feed myself today and so I didn’t have the energy to brush my hair, you wanna fucking do it for me?!” “I know this is my 80th trip to the bathroom, did you know that staring won’t heal my colon or mental state?” and “you have no fucking idea, let’s see YOU try it and end up looking better than this.” It makes you fiercely proud of things like getting up, getting dressed, and making it out of the house, even on good days. Things that most people can’t help but take for granted like eating fried food and wearing jeans can be incredible treats.
               It’s weird to meet someone who doesn’t know your terms and conditions, who doesn’t know that you’re sick, because you don’t look sick, you just look…messy, weird to think that they’re missing this massive chunk of you and your life, like they didn’t know you were married, or like they’re looking right at your face, but they somehow can’t see your nose. You feel like you should have some sort of sign or sticker or flashing light. Partly to excuse the behaviors that seem otherwise rude or imporoper, but partly because you’re proud of yourself. Proud that you’re still standing, proud that you got dressed today, proud that you made it out of the house, proud that you’ve only been to the bathroom three times, and you want them to know, to be proud of you too. You want people to share the joy of your tiny achievements, but they’re still taking all those things for granted, and so they just look at you, and they don’t even see your nose. And you know that you can’t blame them, but some dark part of you wishes that you could. You want the world to know that you’re proud of yourself because you’re still here. But instead they see a girl who hasn’t showered in three days wearing a large mens sweater over old stretched out leggings.
               There’s moments you realize that most people just can’t – or sometimes it feels like won’t – understand. Like when you tell them that you dropped out of college because your meds failed you, and you ran so low on iron that you could barely make it up the stairs to your dorm or down three blocks to class or much further than the cafeteria, which didn’t have any food you could eat anyway, so you ended up in bed, turning down invitations to go places and have experiences because you haven’t managed to eat yet. You tell someone you quit college for all those reasons and more and they say something like “You made the right decision, your health is always more important, you can go back next year!” and you suddenly want to punch them. You worked so hard to get where you are and made all your decisions knowing full well that your health comes first, you KNOW you’re right, and yet they try to VALIDATE you, like you need them to tell you what’s okay for you and your illness, when they can’t even see your nose, like your some fucking parking ticket. They nod importantly and you try not to remind them that you have no idea if you’ll be able to go back next year, or ever, because what I these meds fail you? Or you get worse? You want to scream at them that your personal strength and ability to self validate are practically all you have left at this moment and don’t they DARE try to take that away from you, but you realize that they just won’t get it. They can’t see your nose. You can scream and shout all you want but they won’t be able to see it.
                There’s something so very wrong with having something so large, and so invisible, like the opposite of the elephant in the room, you’re sitting there trying to describe this damn elephant, and they don’t even believe it exists, and they’re still a little weirded out that you don’t have a nose.
