Things you need to know

I’m going to tell you a story. It’s the story of how I realized that I over-identify with my disease.

First, you need to know that my brother and I share a best friend. Her name is Chloe. She is tiny like a pixie and also has the attitude of one. I can get away with writing that because she is getting married on Saturday, which is keeping her very busy so she cannot read my blog. That is the second thing you need to know.

Both my brother and I are in the wedding party. We even have to walk down the aisle arm in arm, which is very creepy but proof that we will do anything for Chloe. The point of all of this is that for Chloe’s bachelorette party we rented a house in a town called Gun Barrel City and all the bridesmaids and groomsmen attended.

Gun Barrel City sounds like an awful place, and this is because it is indeed an awful place. They once had a confederate flag rally that started in the parking lot of the local Walmart and ended in the parking lot of another Walmart. So the house we rented was huge and cheap.

The third thing you need to know is that at this party I met a girl named Maddie. She was very beautiful and kind, with long strawberry-blonde hair that fell down her back and looked good when it was dry and when it was wet (my hair will never look good wet). She was always smiley and voluntarily washed dishes. Also, she had Crohn’s Disease.

After having this blog for over a year, I’ve tried my best to cultivate a certain image. When people read these posts or the ones on my instagram and ask me why the word “happy” is included in almost all of my social media, I explain that it’s just kind of my internet thing. “I’m like, a girl who is sick… but she’s still living her life and having a good time, you know? I’m just trying to represent that you don’t have to be bitter about your illness.”

For all of the effort I have to put in to seeming a certain way, Maddie just is. I had finally met a girl who encompassed the whole message I had spent countless hours trying to send, and guess what? I did not love it. In fact, it really freaked me out. That’s the fourth thing you need to know.

I felt like I had showed up to Prom only to walk in and realize that someone was already wearing my dress, and it looked better on her.

I’ve had this feeling before, and it’s always an uncomfortable one. I think it stems from growing up in a society where girls were always pitted against each other and forced to be competitive. If a girl is prettier than you it’s fine, as long as you’re smarter, or more talented, or funnier, or if all else fails, sicker.

It’s a terrible way to think, and something that I hate recognizing in myself, but the truth is that it’s there. Girls are trained to be competitive with each other from a young age. In the past two years I’ve noticed a huge change in the world encouraging girls to build each other up rather than gain a false sense of security based on someone else’s misfortune. It’s a movement that strikes a chord in me and, had you asked me two weeks ago, I would’ve said I was behind one hundred percent.

But what I didn’t know was that I had been holding onto a little secret weapon: yes, there would be times when I would feel inferior to other girls, but no matter how smart or pretty or talented or hilarious they were, they didn’t also have a disease to battle like I did.

I never realized just how much I relied on Crohn’s to form my identity until I was put in a situation where it didn’t make me so special anymore.

The first night at the house I pulled Chloe aside. “Maddie is so sweet,” I said, and Chloe nodded along. “But I have Crohn’s better than her, right?” This is not an entirely logical question. I was not entirely sober.

Chloe just blinked back at me. “Um, I don’t know,” she said, “I think Maddie almost died once.”

Great. Just great. Here Maddie was, with her strawberry-blonde Rapunzel hair and her near death experience, and what did I have? A couple of surgeries on my anus, a pack of medical gauze and two very flat braided pigtails. I felt embarrassed to run this blog, like the tagline to my life was “has Crohn’s Disease” and I was faced with a girl who had the same thing, possibly worse, and didn’t shout it from the rooftops. Somehow I felt like a phony.

But the next day we played volleyball and Maddie was adorably terrible. So was I. We laughed over it each time we spiked a ball outside of the fence and rubbed our sore hands afterward. We went inside and had a long talk about both of our treatments and a camp she had worked at as a counselor for girls with Crohn’s and Colitis.

I admitted to her that sometimes I didn’t feel sick enough to be considered sick, and Maddie of the near-death experience actually agreed with me. I guess that’s just the nature of Crohn’s. Some years you’re in the hospital with an IV in your arm and a fistula in your butt hole, and some years you’re playing volleyball two weeks before your friend gets married. It’s still your life.

And if this were a better story, I would end it here. I would say that meeting Maddie taught me the lesson that Crohn’s is not the only thing that makes me a special person, and that I don’t need to compare myself to every single girl I meet. But this is not that kind of story.

I am still insecure. I still base too much of my self worth on what other people say about me. And I still place a lot of my identity in being a person with Crohn’s Disease, and I feel a little threatened by every other person I meet who has it as well.

But I am working on it. And I will go to Chloe’s wedding in a few days and stand next to her and be comfortable with the fact that I am not the prettiest, smartest, funniest, or kindest person in that room. I will even be alright with the fact that I am not the only girl with Crohn’s.

There are a million qualities inside of me that are constantly colliding and breaking apart in a million different combinations, all contributing to who I am from one moment to the next. My illness is a huge part of my life, but a small part of who I am. So are my looks, the grades I make, the way I come across on the internet.

I think I’m more made up of the weddings I’ll attend, and the times I’ve cried over how another person was feeling. And probably the way I handle those feelings of insecurity that will undoubtably pop up every once in a while.

As for Maddie with the strawberry-blonde hair, I’m not sure if she’s ever felt this strange strain of competition when it comes to our disease. I’m not sure if she’ll ever even read this at all. We never got around to talking about it.

Once I got to know her and counted her a friend, it never came up. That’s the secret, you know. At least, that’s the best way I’ve found to fight it. You can’t block those feelings of jealously out completely, but you can choose to put your energy into knowing that person instead of just envying them. And once you care, everything else gets less important.

That’s the last thing (really, the only thing) you need to know.

7 thoughts on “Things you need to know

  1. Thank you for always being so honest. I don’t know where you get your courage from! All of my life, I have been labeled as “the smart girl” and when anyone challenges that in my head, I get really defensive and jealous. I hate that feeling. It’s so hard to fight those thoughts. But the thoughts I find worse are those of jealousy. I hate being jealous of other girls’ bodies. How do you begin to accept that you may never be “as ____ as” someone else?

    Liked by 1 person

    1. Hi Samantha! Thank you for commenting. I know how you feel. I think the problem is that when people label you as “the smart girl,” they are, in some ways, reducing you down to that one ability. In your head you start to think that is one amazing thing is the only amazing thing about you, so when you meet another person who is just as good or better at that one aspect, you feel like you suddenly lose who you are. It’s so easy to start feeling jealous from there! If we place all of our value in how our bodies look or how smart we are or how funny we are, we will always lose ourselves when someone else who is good at that one thing comes along. What you have to realize is that there is no one with your exact combination. Not only are you smart, but you are kind, and beautiful, and a million other things. It’s not the specific amount of anything in your personality that makes you special, but rather the combination of all of those ingredients. Just think, your friends don’t like you for one specific reason– they like you for so many different ones! So if you run into someone who makes you feel bad that you will never be as _____ as them, try to remind yourself that your value doesn’t lay in that one specific area. Your value is vast and immeasurable and very spread out, and meeting the smartest girl in the world cannot threaten that.

      I hope that helps a little bit! It’s a process though, I know.

      Liked by 2 people

  2. I was also labelled the “smart girl” (like Samantha) throughout my life so it was a shock to find that I wasn’t as smart as I thought, at least not in everything. And with this label of being the “smart girl” comes the disappointment of getting lower grades than expected. Since coming to university, I’ve met people who are more creative and smarter than I am and I’m finally at a place where I feel okay about it. I don’t need to be the smartest, I know just how smart I am and I don’t need to compare myself with others. I don’t need to be the best at everything. Though I do still feel jealous from time to time. This realisation came around the same time that I realised that, although I’ve believed all my life that I was shy, I’m not. I’m anxious because of bullying in school but the real me is bubbly and excitable and I’m trying hard to become that person again.

    I enjoyed reading your post and your blog in general. You’re very honest and I think that takes a certain kind of bravery.

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  3. I don’t have much to say other than I am so inspired by you. You’re honest and you’re brave, and I just want to applaud you. I can relate to some of this; not in the same way as you, but of course the whole idea of competition between people is always going to be there. So thank you for being genuine, honest, true, inspiring and a blanket of reassurance. I truly enjoy your blog and everything you do around or outside of it. I wish you the best for all your days to come!

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  4. I can definitely relate to your experience. When you live with a chronic illness for so long, you start to find comfort in it. It’s consistent, reliable, and at times predictable. Of course, none of this makes sense, but it’s true. And when someone else comes along and shares a similar story, sometimes it feels like a weird competition that you have to win because, if nothing else, this disease makes you special. Thank you for being so honest and shedding light on this strange emotion.

    And if it’s okay with you, I’d like to note you as one of the blogs I follow in my blog about managing my Crohn’s disease: https://parentingwithcrohns.com/. I think your blog is a great resource to people like me who sometimes need a reminder that we’re not alone in this.

    Thanks again for sharing!

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  5. Shannon,
    I finally sat down long enough to read your blog. I remember you mentioning it at the wedding and since I knew I would absolutely love it I figured it was time to take a look. To be honest with you I was having a pretty icky day. I was feeling sorta crappy and sort of sorry for myself right about the time I started reading this. You can never understand the emotions that rushed through me upon reading this. Let’s just put it this way, it has been a long time since I sobbed, a very long time. It took a lot of effort to read your words through my tear filled eyes, but I did it. It astounds me how little we humans can sometimes think of ourselves. When I was reading those words, perhaps the nicest words anyone has ever said about me, I realized how little I have come to think of myself. That’s not to say that I just hate who I am but I just came to think that I wasn’t very important, that I couldn’t have an impact, and that I liked being a homebody because then I could never annoy, bother or anger the people I try so hard to make like me. There is no series of words that could be put together perfectly enough to describe the feelings I got while reading this. There is a part of me that is sad that I’m so critical of myself, part of me is so honored that you would take the time to write such beautiful things about me and part of me just wants to stop you and say “this isn’t me! I’m not this beautiful, cool or nice!” Mostly though I just want to thank you. At the very least your words make me want to be the person you believe me to be. I sauntered into the living room after I finished reading, still sobbing mind you, and forced David to read it because it was just too much for me to handle on my own. I guess I’m using all of this to say thank you and to try to make you understand how honored I am to call someone as honest, beautiful, courageous and most of all, KIND my friend. From one Crohny to the next, as your friend, I love you. Thank you.

    Liked by 1 person

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