I talk a lot about living the Crohn’s life. I mean, it is the title of this entire blog. But it’s come to my attention that I’ve never shown you what it’s really like. So I present to you: a day in my (Crohn’s) life.
Now, this isn’t to say that my experience is the universal experience because it isn’t. And this isn’t to say that my life revolves around my disease because it doesn’t. This is just a snapshot of what it’s like to be me: a bored 18 year old whose been stuck in her house for 8 months and often eats fruit snacks for breakfast. Oh, and she has Crohn’s.
So, here it goes:
7:45 am: 1st alarm goes off. It’s a really stupid jingle and I hate it. I’m not even half awake but I already feel like I’ve been hit by a truck. Is it the autoimmune disease? Maybe, but honestly I think we all feel this way these days. Whatever, back to bed.
8:11 am: You have class in 4 minutes. Just reminding you. Let’s watch someone decorate a cake on instagram before we get up though.
8:15 am: Wow those three steps to my desk were tiring. Time to teach myself chemistry!
11:15 am: Lunchtime! Don’t eat the leftover tacos. You stomach will die. This is not a drill. *eats leftover tacos*
12:15 pm: Woohoo, back to work. Your stomach hasn’t started hurting and you’re pleasantly surprised. And a tiny bit scared.
1:30 pm: 20 minute walk. My gym teacher considers it cardio.
3:15 pm: School’s over. Maybe I’ll start my homework.
4:53 pm: Wake up confused with music playing and the lights on. Have no clue how you ended up in your bed asleep in the first place. I guess being *this* cool is exhausting.
5:00 pm: Physical therapy time. Yep, at the ripe old age of 18, my spine is degenerating!
7:00 pm: Eat dinner. Do more homework. Riveting.
10:00 pm: Take a shower. Put on new sweatpants.
10:45 pm: Watch an episode of Criminal Minds. The perfect way to lull yourself to sleep.
11:00 pm: Hey, don’t get too comfy! You forgot to take your medicine. Nice try, pal. You peel yourself out from under the covers and go take them. Why are vitamins so huge? At least it’s not Humira night (mainly because that would require me to walk downstairs to go get it).
Now, you’re probably wondering, why the heck did I call this a “day in the Crohn’s life” when there’s hardly anything chron’s-y about it? I snooze my alarm. I go to school. I eat lunch. I do homework. I text my friends and watch tv. I do all the things everyone else does. I’m normal. Well, you do have a point. From the outside, my life is pretty normal. Maybe even boring. Sure, I might take a few extra pills, give myself shots every once in a while, and skip out on the popcorn, but other than that, I’m just your regular old teenager.
And that’s true. I am a regular old teenager. I have friends, and homework, and activities. I have fun and spend way more time watching food videos than I should. From anyone else’s perspective, my day is 100% typical.
But here’s the thing: it’s not what you do see that set’s my day apart from the average person’s- it’s what you don’t. You don’t see me waking up at 4, and then 4:30, and then 5, and then 5:30, all the way to my first alarm because of the pain in my joints. You don’t see me sleeping all afternoon just so that I’ll have enough energy to go to soccer practice. You don’t see me arguing with myself over whether I should take the pain reliever now, or in 2 hours, because what if it gets worse? You don’t see me wondering if that red mark is a scratch or a sign of inflammation. You don’t see me taking my temperature hoping I don’t have another fever. You don’t see me staring at the mirror for 10 minutes before taking my medicine being angry at the fact that I have to take it at all. You don’t see me reaching for my phone to text someone about how I feel, only to put it down when I realize that they won’t understand. You don’t see all the thoughts I have taking up room in my head just so I can get through a day of fatigue and chronic pain. You don’t see me laying in bed, exhausted, knowing I’ll probably think them all over again tomorrow. You don’t see me wondering if it’s all in my head.
That’s not to say that my life is crap, that I mope around as a prisoner to my disease, and that I live my life in constant pain and misery. I do fun things. I do “normal” things. I feel ok a lot of the time. But I also do hard things. I push through things. Some days, I give in to things. And most of that hard work is behind the scenes. Crohn’s is an invisible illness. It’s pretty much impossible see how it affects me. And in a world where we think we know one another based on how we see one another, that can be really tough.
Clearly, reading about a day in my life won’t let you know how it feels to be me, just as reading through a day in yours wouldn’t teach how it feels to be you. Because we all have our game faces that we show to the world, but we also have our hurdles. Our silent battles. And I’m not asking you to expose yours to the world the way I’ve done with mine; I’m just asking you to be aware. Know that ever single person you see has something going on that you can’t. And whether they want to share that thing with you is up to them. The important part is that you’re willing to support their fight even when it’s invisible to you.