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Why the Word 'Challenge' Takes on a Different Meaning in My Life With Chronic Illness

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“I like the challenge.”

“Sounds like a challenge.”

“Tell me about a challenge you have faced and how you have overcome it.”

These sayings are innocuous enough. Maybe even common, depending on what stage of life you are in. But these words can also cause harm. They cause me harm because I have several chronic illnesses. They cause me harm because the way I understand the word “challenge” and the way the rest of the world understands the word “challenge” are very different.

For me, every single day is a challenge. Some days, every single hour is a challenge. I live in a world where just getting through the next moment is my challenge. Don’t get me wrong, I love what I do — I am a student, I love what I am studying and I have a passion for the work I will do when I graduate. But the fact that I enjoy all of those things and I want them so badly does not change the reality that every moment of my day is challenged by my illnesses and I live in a world that continues on as though that is not the case.

I usually get about two to three hours of sleep before I wake up to the sound of my own joint dislocation. The sound of my own dislocation, not to mention the feeling. Resolve that, try to go back to sleep — maybe I can, if I’m lucky that day.

I wake up to my alarm and I have to realign everything. I start with the stuff I need to use to realign everything else. First, each knuckle joint and hands, then wrists, shoulders, toes and feet. Once I stand up I can deal with my knees, hips and spine.

Then it all begins. I monitor my blood pressure, heart rate, blood sugar levels, temperature. I have to think of my exact posture — I make sure I’m not leaning too far this way or that or I’ll mess up something we worked on in physical therapy last month. As I go through my day, I dislocate, feel faint, and feel like I’m going to collapse under it all.

When I finally get home, every single day, I spend the next 30 minutes laying on the floor. Thirty minutes of quiet. Thirty minutes of not having to support the weight of my own head. Thirty minutes of not having to worry about falling.

And I do it all again the next day.

I generally think of it all as a hum. I do so much other stuff while also keeping track of all of my health concerns. It just all happens in the background and then if something’s not right, an alarm goes off to alert my conscious mind.

But that’s not entirely honest. It wouldn’t be possible to keep track of it all if I wasn’t always thinking about it in some capacity.

And so I struggle when people talk about challenges. Because I’m never entirely focused. I’m never displaying to the world how I truly feel. I’m never sure how to explain what I’m dealing with.

It’s an incredibly isolating “challenge.” When someone asks me to tell them about a challenge I have faced and how I have overcome it, every single one that comes into my head is health-related. But that’s very personal. That’s very singular. That’s probably not what they are expecting when they ask the question.

But those are my challenges, and I overcome them every single day.

Getty image by Curtoicurto.

Originally published: February 4, 2020
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