15 things IBD has made me thankful for

turkey-1509892148jybI’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

What you see is what you get…or is it?

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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.

glasses-1246611_1280Now, 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.

14750882233_cf43e135b9_bThey 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. 

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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. 

 

It’s almost World IBD Day – Why aren’t we celebrating?!?


pexels-photo-234196May 19, 2017, is a big day in the IBD community. It’s a day where 38 countries from 4 different continents come together to raise awareness. There are fundraisers. Walks. Events. Obnoxious purple lights. Because it’s World IBD Day

Now, I’m sure you’re thinking, “Seriously? Why do you care so much about this random day? Nobody even knows it exists. Stop being so dramatic!”

But that’s exactly what I’m getting at; if nobody knows it exists, how can we raise awareness? If nobody knows, then they can’t possibly care, and if nobody cares, then how can we fund research? Continue reading

Why Me? It doesn’t matter.

14750882233_cf43e135b9_bOften times, the first thing we think when given the diagnosis of a chronic, incurable, and needy disease is “Why me.” We want to know how whatever it is that we have got there. Sure, there are genetic factors. Sure, there are environmental factors. But in that very first moment when you feel like your world has been smushed and cracked open and flipped upside down, it’s not a question of “why me”, but “why me.” We want to know why we, out of all people, became the “lucky winners.” Honestly, there isn’t really a real answer to this question. But for the person who’s asking the question, no answer is not an option. They want an answer, and they want it now. So, here’s my answer: Continue reading

Embracing Vs. Defining – How to accept IBD without letting it rule your life

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Those of us with Crohn’s disease are often told that because our condition is incurable, we need to “accept it as a part of life” and “just live with it”. On the other hand, we are also told that we can’t let our disease define us, or “win”. Separated, these phrases are valuable pieces of advice and can inspire us to find happiness even when we feel sick. I mean, who doesn’t feel a burst of inspiration when they’re told “be a fighter!”? However, when read one after the other, these “words of wisdom” completely contradict each other. How are we supposed to accept Crohn’s as part of our lives but not let it “beat” us? Continue reading