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

An illustration of the back of a girl's head.
An illustration of the back of a girl's head.

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.”

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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.

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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.

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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

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