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When Chronic Illness Makes You Look for a Different Kind of 'Normal'

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I can say growing up I never really had a “niche.” I was always trying new activities and trying to fit in. Since I was a little girl, I felt like I was an outcast or I just wasn’t up to “par” like the other kids. As I continued to grow I ended up finding people that I became inseparable from, but I never felt like I was as good as them or that I could keep up. At the same time, I would say that I never really felt like myself or my own person.

I tried playing sports and I couldn’t handle it; literally none of them. I’d be exhausted and would be too worn out for a kid. People would look at me and think I was lazy or just tell me that I wasn’t trying hard enough. But, I was! I was trying like no other, fighting to have something that would make me feel like I belonged or just a “normal” human. Unfortunately, I just never excelled at anything with physical activity. I would overheat way too quickly and would always tell my mom “I don’t feel good.” I literally think that sentence was, and still is, my most spoken. Strength was something I was never able to achieve. People would look at me and assume I was fit because I was skinny, but I wasn’t even close to really being “healthy.”

I wanted to be a cheerleader in high school and no matter how hard I tried, I just couldn’t do it. No, no matter how hard you set your mind to do something, it doesn’t mean it’s going to work. I learned this the hard way. I didn’t give up. I tried feeling it in my mind, body, and soul. But it was an epic fail that would cause physical and emotional pain. I wasn’t just a teenager that only wanted to sleep all day, it’s because I literally couldn’t fight the exhaustion. When I would try, I would end up sick.

As I got older, I started working. I even felt it there…Why does everyone I know seem like they can just keep going, and I can’t? People with way more on their plates than I do, but they are handling it. For years, I would hide it. I didn’t tell anyone! Not my parents, my boyfriend (now husband), or friends – I didn’t tell a soul. Why? Because I was scared. I was scared that someone would think I was “crazy.” That I would be making this up. I would go into the restrooms at my job and smack myself in the face to try and wake up. I would splash water onto my face just to try to wake up. Nothing worked. I would fall asleep standing up at my jobs, almost fall over plenty of times. It was just a powerful force that came over my body. It was then I knew something was wrong. But I told myself, if something is going to happen, then it will just happen. Just ignore it, it will pass.

I wanted to keep going, I wanted to find my purpose, a place where I could be like others. I would fall asleep driving and even in bathroom stalls. I tried coffee, espresso, energy shots. All I got was palpitations, but no real energy.

When I was in college it just escalated. I ended up with rashes, missing lectures, sleeping through many lectures, and feeling like I was going to fall over in the middle of campus. How come I wasn’t like the other college students? What the heck was wrong with me? I just want to fit in, to find something I am good at. I had so many aspirations. I even ran for governor at my college. I barely had the energy to campaign. From there I ended up in the hospital with unexplained inflammation that would puzzle the ER. They said someone at my age who is “normal” shouldn’t have this.

Things just kept getting worse. And this entire time all I wanted to do is truly find myself. Discover who I was! Be a part of something! Have a talent. Be good at something. Mostly find something I was proud of. But it never happened. I tried to push forward, and a new ailment would come and strike me down.

Now I can reflect on all of this this and say I know why. There was something inside the entire time fighting against me. I just didn’t think it was my own body fighting itself. I find it hard that in my late 20s I still can’t say I am really “good” at anything. My chronic illness was in the way before and is still in the way today. I am hoping that better days are coming, but it seems that as the years go on, it gets harder and harder. I truly feel that my chronic illness has robbed me from me. Maybe if I would have just listened to it, instead of trying to ignore it, I’d be in a much better place today. And to people who keep telling me that I looked fine to them in the past, my best advice to you is – never judge a book by its cover. Because in the end, I think I did learn something I was good at – being strong when I felt like I couldn’t anymore. I learned that my best quality is perseverance and that no matter what, I will find a niche and I will be “normal” –even if it’s a different kind.

Getty Image by Archv

Originally published: July 26, 2018
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