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The Reality of Invisible Disease

March 13, 2019

Having an invisible illness is almost cruel. You carry a ball and chain around with you everyday, but you’re the only one who knows about it. You feel it weighing you down, while others around you are wondering why you can’t keep up with them. With a disease like cystic fibrosis, it's impact is all internal and invisible to the naked eye. 


But what if you could see inside of me? You’d notice my heart was larger than normal from years of overworking itself, trying to compensate for my failing lungs. The same lungs that are so scarred, they show up grey and white on an X-ray scan. My sinuses had to be cut open due to the mucus getting too thick and infected, and caused some of my reoccurring lung infections.

 

You’d also notice my defective kidneys, one of which has two tubes coming out of it instead of one, and the other that had to but cut down because it had gotten too large from retaining fluid. My liver has lesions all over it, damaged by the antibiotics I’ve been taking since I was born. My pancreas is barely functioning anymore, causing me pain every time I eat. And then there is my brain. Although it is not damaged in the physical sense, I do live with depression. 


Even with all of those issues and more, I still look like your average 27-year-old enjoying her life the best way she knows how. It sounds frustrating, but there are two sides to having an invisible illness because, while it can be seen as a curse, it is also a blessing.

 


This terminal disease of mine has taught me to love my life, no matter what may be happening at the moment. Whether I am held up in the hospital for a few weeks of treatment, or backpacking through Europe with my best friend. Those small things shouldn’t be taken for granted, because you never know when you will have that luxury again.

 

Breathing is so overlooked, but I am conscious of each breath that I take, as if it may be my last. And even if it is, I will have been happy with all that were given to me by my failing body because of the life lessons my disease taught me.


Cystic fibrosis affects everything, because everything in our bodies is connected one way or another. But it only affects my body internally, leaving the world ignorant to what I go through. On my hard days I wish it was visible so everyone could see how hard my organs, especially my lungs, have to work to do the simplest of tasks. But not so people would feel bad for me, rather so they could understand why I don’t function like they do, even when I look capable. 


At the end of the day, after the pros and cons are calculated, I wouldn’t change a thing. I can live a relatively normal life and not worry about people branding me as “the sick girl” unless I tell them otherwise. Having an invisible illness is mostly an internal mental challenge for me, because I seem to have the physical stuff down pat after 27 years.

 

It's because I try to project strength when my body is doing everything it can to argue the contrary. An unhealthy routine I’ve become all too familiar with because growing up, I used to hide my cystic fibrosis. “Out of sight, out of mind” was how I thought about it.  However, it always reminds me of its existence eventually.

 

Thankfully, as I have grown older, I am more open about my illness and always address its different parts head on. It is far more liberating when you’re not trying to hide your real self from the world. At times my disease might be invisible, but I’ve learned not to be.

 

You can find Lauren online at her social media handle @laurenkareh 

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