What I Don't Say

Last updated: November 2019

Once you've lived with a chronic illness for a while, you get a lot of compliments. People admire you for dealing with the things you're obligated to deal with simply because it's unimaginable to them. People always talk about how strong I am. Seriously. All the time. People are constantly comparing themselves, saying they "could never have surgery." Or they "don't even know what they would do if they were in my shoes." I get a lot of credit. Honestly, a little too much. My friends and family really think I make medical decisions lightly when truthfully, most of my decisions are made for me.

My body decides for me

When my health starts spiraling out of control, I don't have a choice. I have to do what's best in order to survive. It's not like I'm choosing between turkey or ham. It's not like I'm at a drive-thru with a menu. Usually, when I'm making a decision, it's nearly life or death and I only have a few minutes to decide before my body decides for me. People give me so much credit because they don't know my true feelings. They don't know what I'm really thinking in those critical moments leading up to a huge life-changing decision. They only see and hear the choice I made.


What they don't see or hear is that I am terrified. I'm terrified that I'll make the wrong decision. I'm terrified the drug won't work. What they don't see or hear is that I'm worried. I'm worried about who will handle my expenses once I'm gone. I'm worried if tomorrow will be worse than today.

What they don't know is that behind this smile are a thousand questions: "should I pay my car note online or over the phone? Will I be too tired to call after surgery? Will this drug cause another reaction? What they don't see is concern: I hope this doesn't aggravate my eczema. Maybe the catheter won't hurt so much this time. What they don't see is all of the efforts it takes to be sick. They don't see the paperwork I fill out at work just to have a week off. They don't see me sleep on the floor in my bathroom because I'm too tired to make it to the bed. They don't see me rest after I get dressed.

The compliments are hardly true

Between what they don't see and what I don't say, sometimes I feel as though people don't know me at all. While the compliments indicating how "strong" I am are thoughtful, they're hardly true. I'm not nearly as strong as what they give me credit for and I honestly don't want to be. If I didn't allow myself to break down every now and again, I'd probably go insane dealing with this condition. I allow myself to feel which helps me to deal with the issues that come along with IBD and maneuvering through life. I don't always say what I feel. I don't always ask for help, but my silence certainly should not be confused for strength.

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