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The Non-Hollywood Version of What It's Like to Have a Chronic Illness

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Over the past few years society has developed this weird obsession with romanticizing stories about cancer and chronic illness. This obsession has opened my eyes to the fact that the average person really has no clue what it’s like to be sick. Chronically sick. They don’t know what it’s like to have to get up every morning knowing you’re never going to get better. There isn’t enough medicine, surgeries, procedures or doctor’s visits that can cure you.

I recently met up with some friends and ended up catching them up a little bit on my health conditions. Their responses made it seem like they’d seen one too many sappy movies, because all they seemed to be concerned with was the prospect of me meeting someone while in treatment. Because that’s what happens in every story with a sick person: they find love and meet a fellow patient who changes their lives. I think a big part of society’s fascination with these glamorized stories about people and their daily struggles with health is that they are just that: stories. They have a start, middle and finish. Even if the ending isn’t a pleasant one, I think people are just happy to have closure. But what society doesn’t realize is in real life, our stories don’t have endings. And that’s why real sick people often aren’t portrayed in these books and movies. Nobody seems to like stories without endings.

Being sick isn’t nearly as glamorous as Hollywood has been making it out to be. It’s throwing up constantly, it’s a never-ending amount of pills and pain, it’s not knowing if you’ll be able to stand on your own two feet when you get up. There is absolutely nothing glamorous about the concept of being sick for the rest of your life. People don’t realize how debilitating and horrible it is to have to spend an entire lifetime being chronically ill. And that simple fact hurts worse than any pain I’ve ever felt. Living with that knowledge is emotionally exhausting and eventually you just reach a point where you can’t hold back the tears and pain anymore.


The worst part of all this is there is no escape. Not from the physical pain or the emotional distress. There isn’t a way to make the incurable disappear. We learn and find ways to cope with the physical pain. We have no choice but to do that. But it’s the emotional pain that makes you feel like there’s somebody holding your head down in the water. Try as you might, you can never really escape that crushing feeling. How can anybody be expected to get rid of such an emotional anxiety when the very thing causing it is never going to go away? Being sick is like being eternally stuck in the clutches of the unknown. At any given moment, something could go wrong. It’s so hard to not feel anxious or depressed or just totally lost when the only thing that lies ahead of you is a giant mystery. You rarely get concrete answers when you’re sick and when you do, they’re usually answers you wish you’d never heard anyway.

One of the things many chronically ill people wish for constantly but hardly ever get is understanding. I just want, for once, to have someone in my life who can, on some level, grasp what it is I am feeling.

For many of us, it’s like living in a world that only gives you the capability of being 90 percent happy. Sure, 90 percent isn’t so bad, and when you finally reach that point it might feel like you’re on top of the world, but in the back of your mind, that missing 10 percent is gnawing away at you more and more with each moment that passes, and soon you find yourself chasing after the impossible notion that you can actually achieve it. You wish every day to be as truly happy as all the people around you. Instead you feel happy – with a side of worry and fear.

Imagine coming up with something awful that could happen to you, writing it down on a sheet of paper and then it came to life and engulfed you. Sometimes it’s actually like living a nightmare, especially when your symptoms flare up and you are reminded even more of what separates you from the rest of the world – your own weakest link. This is what the movies don’t show but most patients wish others could understand.

Being sick, really sick, makes you learn to appreciate every good second and every good minute of however many good days you might have. You aren’t scared of death because you’ve already stared it in the face a few times. You’ve come to realize it’s useless to dwell on the little things because you have more important things you can focus on in life.

I can’t tell you how many times I’ve wished to be “normal” or even like those “sick people” that are portrayed on TV – even for one day. But I have learned to appreciate my life and the reality of my situation.

Being sick has made me strong but it has also made me weak. Being sick has given me a unique understanding and knowledge about life, all while it eats at my own. The truth about being chronically sick is that it’s the biggest blessing in disguise. It is so much more than just having an illness. It’s having your life uprooted and ripped at the seams and fighting every single day to get it back.

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Thinkstock photo via OcusFocus.

Originally published: June 2, 2017
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