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Chronic Illness: The Full-Time Job I Never Asked For

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I can’t remember when everything changed. I have no idea what caused it or how it happened, but my whole life turned upside down. And then I had to figure out how to live my life again, but this time with twice as many worries as I previously had. Perhaps even more.

Being chronically ill is hard enough when you have to feel the pain and survive through the numerous horrid symptoms. The worst part is the never-ending work you have to do in order to live a “normal” life – well, as normal as it can possible get. Having a chronic illness is a full-time job that none of us asked for, but we can’t say no. There is no choice here. So, we add this huge workload to our lives, plus all the normal tasks of simply having a life – such as grocery shopping, studying, socializing, cooking and keeping the home in order, and the “real” work. Not like these normal tasks are easy, they are extremely hard for us, too.

Disease management a fancy name for the dirty hidden work of having a chronic illness – consist in the loads of doctor’s appointments, never-ending research, learning how to cope with your new energy levels and symptoms, adapting every single little thing to become viable for you, managing medications and possible side effects, handling insurance, making sure all of your doctors agree with your treatment plan, handling random flare ups of your conditions and prescription refills… and the list can go on. Taking care of our health and extra needs is a complicated job that doesn’t pay and “costs” us a lot.

It’s hard to imagine the strength, time and effort it takes out of every single day. Besides the fact that chronic illnesses are unpredictable, there is also the uncertainty that every day brings and new challenges. It’s amazing how well we can keep it all together. Sometimes we end up falling from exhaustion, but we don’t ever give up – it’s not like there is a possibility to, but we always do our best and excel at it.

Our better days are sometimes someone else’s bad days. But we have learned to enjoy the little things and see grace in every tiny victory. Every person is different; everyone handles a chronic illness in a different way. But something that is common to all of us is how hard it is and how much it can impact your mental and physical health. This is the reason why the chronically ill love the simple joys.

Every day is a battle and hard work, and when we ask for help – oh boy, how hard it is to ask for help and admit that your body is not capable of doing something – it is because it’s even harder. Yes, we have a dirty, hidden, lifelong full-time job we never asked for. Our lives are hard and complicated and sometimes we wish we didn’t have it. But we do. And we keep going. We stay strong and, somehow, we carry on with hope.

Getty image by Katya_Havok

Originally published: March 25, 2021
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