People like to know all the answers. They like knowing the who, the what, the where, the when, the why, and the how about everything. They like when things make sense.
And it’s fine to like these things. It’s fine to like knowing the answers, the who’s, the what’s, the where’s, the when’s, they why’s and the how’s. It’s fine to like it when everything makes sense.
But the problem is, that as people, most of us get so used to having these things that we begin to expect them. Anytime something happens, we expect an explanation. An excuse. Some strand of logic that will make us understand exactly what’s happening and why. Continue reading
For those of you who don’t know, my name is Becky. I am 15 years old. I’m a freshman in high school. I play soccer. I like to write. And eat Chipotle.
When people look at me, they see a teenager. A student. A friend. A sister. A daughter. A cousin. That annoying person who color codes their history notes. (Don’t worry; that was just a phase).
But, none of those people really see me.
Happy New Year, everyone!
I expected to get this post up by January 1st (I didn’t). I expected to write about starting a new year with new goals in mind (I did…kinda?). A blank slate. A fresh start.
But as I was writing, I realized that we can’t just put the past behind us and start each new year from ground zero. Sure, we can choose to let go of things we’re holding on to. Friends. Jobs. Ugly sweaters. Gum we’ve been chewing for way to long. Things that we control. But what about the things that hold on to us? What about the things that, no matter how hard we try and let go of, will never be gone? Snot. Clingy people. Feelings. And chronic illness. Things we can’t control.
Life wasn’t built for fatigue. It wasn’t built for side effects. It wasn’t built for people who need pills, and shots, and special diets just to be “normal.” To put it simply, life wasn’t built for people who are chronically ill. And living in a world where you want so badly to do all the “normal person” things, where you try so hard to keep up with everyone else, and where you smile and say you’d love to have plans even though you really want to take a 4-day nap becomes exhausting.
But for so many people, even worse is the feeling that they are weak because they sat out of that soccer practice. That they aren’t as capable because you rescheduled a math test to a time when they were only 43% zombie as opposed to 64%. That they are being a bad friend by declining an invitation to dinner. Continue reading
I’ve tried to write this post for a long time. I tried to make it funny, but I ended up rambling about the inner workings of apple pie for 4 lines straight. I tried to make it short and to the point, but if I was any good at that, this whole paragraph wouldn’t exist. I even tried to write something in that cute-holiday-festive-pumpkin-spice-style that’s taken over Walgreens, but the cheese factor was starting to seriously mess with me. But then I realized that the problem wasn’t the way I was writing. The problem was I didn’t know what I wanted to say. Continue reading
If you were to see me walking down the street, you would think there was anything “wrong” with me. In fact, you could stare at me for 2 hours (which, by the way, is extremely creepy and not recommended), and still not see anything that would make you think I live with a chronic illness. And it’s not because you need glasses.
It’s because there’s nothing to see.
Now, on the one hand, this is great. People with invisible illnesses can look amazing even while there are chemicals flowing through their bodies trying to make their crazy immune systems shut up. We can look “normal” even when we feel like zombies with 206 broken bones. But “looking good while feeling awful” poses its own challenge:
People just don’t get it.
They can’t wrap their heads around the fact that we look healthy when we’re not. They don’t get how we have an incurable disease, yet we don’t live in a cocoon of pillows and hourly chicken soup deliveries and a mini pharmacy behind our cabinet doors (okayyy, maybe one of those things is not entirely false…). They don’t get how we could feel so bad when we look so good. And they especially don’t get how we feel one way one hour and a different way the next. But to be honest, neither do I.
We often feel like we have to explain ourselves to the people who “don’t get it,” (which ends up being almost everyone) because we don’t want them to think that we are weak, or faking it, or overreacting. Sometimes, we even have to remind ourselves that we have a real condition and aren’t just “crazy people” who make up the fact that we don’t feel good.
It‘s scary to look in a mirror and see the reflection of a “normal” person when you feel like crap. It’s awkward to sit out of gym class because your joints hurt when there is no visible problem with them. And it’s hard to tell your friends that you don’t feel well the past three times they’ve asked for plans without them thinking that you are just making excuses. But we shouldn’t have to explain ourselves or prove how sick we are.
And wouldn’t feel this unnecessary stress to do so if everyone could just understand that what you see isn’t always what you get. It’s true for most things.
Think about it; when you buy chips out of a vending machine, you see the colorful bag, the perfect chip on the package. But then you open the bag, and you realize that about 78% of it is air, and most of the chips inside are crumbs. But this bag of chips looked like all the other bags of chips. So how were you supposed to know?
People with invisible illnesses are the same way. On the outside, we look normal. Sometimes even better than normal, if we bother to brush our hair. But inside, we don’t have as much energy as “normal” people. And our bodies don’t work as well as “normal” people’s.
Simply looking at someone doesn’t tell you who they are. And it certainly doesn’t give you permission to make assumptions of that person of who you think they are, or how you think they feel, or what you think they should be doing. Because even though someone may look perfectly normal, it doesn’t mean that their struggles are any less important.
So, yes, we might look ok. But that doesn’t always mean that we are. And we know that, and we kinda know the science behind it. But it’s not up to us to prove it to you. It’s up to you to have empathy and understanding for the struggles of other people. Even when you can’t see them.
If you’ve read my blog for a while, you’re probably thinking, “you write about this same thing all the time. We get it; people with Crohn’s look great. They feel like crap. Thanks for sharing. Move on already!” But even though you, the amazing person who is reading this right now might get what I’m talking about, there are so many people who don’t. They don’t think about what someone might feel like on the inside, and they don’t try to understand.
So, I am asking you to share this.
Whether you share this physical post or just the ideas it holds, that is up to you. By doing so, you are helping to raise awareness for all invisible conditions. You are helping to teach empathy and understanding. And, most importantly, you are making it so that those of us who live with these conditions no longer feel the need to constantly be trying to prove how sick we are. Becuase no one has time for that.
If you live with Crohn’s, Colitis, or any other illness, you’ve probably been given a complex explanation of what your condition is. But do you really know what’s going on inside your body? And if the answer is yes, do you really think your friends would understand if you tried to teach them? Sadly, most people don’t have a clue what IBD is, and trying to explain it to them without getting caught up in a bunch of medical jargon is extremely difficult, especially if you don’t fully understand it yourself. So rather than try to mimic a biology professor, I decided to come up with a simple, understandable way to explain what IBD really is in an entertaining way. I’ll give you a hint: it involves donuts.
So, here we go:
Hey person reading this! Guess what?
Livin’ The Crohn’s Life is now on YouTube!
This is the first of many education-themed posts I plan to create. Please share any suggestions and/or ideas for future topics you would like to see here!
With school starting just around the corner, I thought I’d share a few tips on how to make your backpack or locker functional for both your academic and medical needs. So, first things first: Continue reading