Hello again. I apologize for my distance, a lot has happened. Sorry to disappoint but, for this, we’re going to take a break from talking about E (spoiler alert: it’s an ending turned sorta-kinda tragic but for the best and most likely, for you, will be left a mystery like my identity) Anyhow, so, let’s have a little chat. How many of you know about invisible illnesses? Hm? Anyone? No, I’m not talking about mental illnesses.
I’m talking medically legitimate diseases that are proven via procedures, countless appointments and of course the pricks and prods of bloodwork. The kinds when you look at a person, they look absolutely fine. I’m talking specifically, autoimmune diseases. Crohn’s disease, Ulcerative Colitis, Rheumatoid Arthritis and Celiac disease…all of which, well, I was diagnosed with approximately seven years ago (it all started with Celiac at seven years old which to put in context, I would say I’ve been gluten-free probably thirteen years).
Now by this point, you’re either thinking woah holy crap how does this girl live or okay I care why or uh um alright, what now? Well. Hi. Let’s do a little bit of a crash course.
Let’s assume for a second that, you know absolutely nothing whatsoever. Crohn’s disease and UC are underneath the umbrella of a condition called IBD, inflammatory bowel syndrome. IBD is a MUCH more serious condition that commonly mistaken IBS. IBD requires countless medications, procedures, dangerous treatments, and hospital stays. Overall, IBD has to do with, you guessed it, an inflammatory condition affecting bowel, also known as anywhere from the esophagus to the rectum is inflamed and lined with ulcers.
Sounds painful right? It is. Now, you see me writing this is simply educational purposes. (But also, humor. I got lots of poop jokes. It’s just another part of IBD!! But I’ll save the jokes for another day and time…)
But, in a casual way, because quite frankly, when you don’t look sick, people think you’re fine.
There’s no civil war in your colon and you don’t have to race to the bathroom the second your stomach grumbles, society says. There’s no being unable to go to class because you’re so fatigued. No, to society you’re just hungover, like the football guys in your spanish class accuse you of being because you look like you haven’t slept in days. Or maybe the reason you run to the bathroom right after you eat is not because your stomach can’t handle it because of your damaged and bloody colon, but because society thinks you’re bulimic. Or better yet, because you haven’t been eating because for once you want to not spend your life in the bathroom, people ask, “What’s your secret? You look amazing! How’d you lose all that weight?”
Well. Society is full of a bunch of idiots. But! These idiots could be no longer be idiots if! Perhaps they’d be a tad more open-minded and realize not everything is what it seems. These days, it seems that being gluten-free is a very in-style thing to do. For celiacs, this is the most frustrating thing because when you say you’re gluten-free due to an allergy, people never take you seriously. But that’s besides the point.
With Crohn’s and Colitis, I LOOK fine. When I went home for a week and a half for a cute little hospital stint, nobody guessed I was sick. Because, to society, if there’s no visual evidence, it doesn’t exist. See point A. Society is full of a bunch of idiots. But hey, there are a few good people out there.
Can you imagine what it’s like to be unable to hold a fork or a spoon for a day? Or be unable to walk? Not have the strength to shower yourself? You can probably picture what this could be like. But until you experience it, you will never know. This is my reality. I have adjusted my life to make things work. I have worked my ass off to get to where I am in school.
But life, it’s a constant cycle of working harder and harder until you can’t anymore. And if you give up, there’s nothing left. So that’s where I’m at. Stuck in a rut after being bound to an IV infusion drug monthly for at least the next five years of my life. The drug will pretty much kill my immune system, is extremely rigorous, and is quite frankly, dangerous. But what choice do I have? I don’t. My body betrayed me and the only route to discharge was this lovely escort.
So now, it’s a time period of sit, watch, wait. Will things get better? I guess we’ll see.