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The Difficult Truth of Chronic Illness We Need to Get Out in the Open

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In my office, whenever I’m about to have a conversation with one of our employees that will be difficult, I always open the conversation the same way:

“This is going to be an uncomfortable conversation but we need to have it so let’s both take a deep breath and just work through it.”

This is one of those discussions — one we all face as “permanent patients” when talking to loved ones, employers, our children, our spouses. For me, it goes like this: I’m not getting much better, in fact, I may get much worse. For now, there is some hope that we can edge toward some changes for better quality of life but the truth is, there is no miraculous healing that will occur, I will be, I am chronically ill and that’s a truth I need to accept in order to get up in the morning and start my life over again each day. I say this without being a martyr — this isn’t something I’m presenting as a way to request pity or sadness from others.

woman in doctor's office getting an infusion
Katy receiving an infusion.

It’s a fact and it needs to be discussed so we can have normal conversations again. When people ask me about my newest medication treatments and ask, “Are you better?” I cringe. I’m not. I won’t be, and I know that. I accept it, but others have a hard time hearing this. I usually tell a lovely little white lie and answer “I think this is the treatment that will work!” I proclaim this emphatically with a big smile just so the other person doesn’t give me that confused, mildly distressed look. Inside, I know it isn’t true.

I have to wonder if there isn’t some joy in accepting the reality of what a life like mine might be, albeit different from others. It’s not often we have a full-throttle change that requires a perspective shift, and in some ways, I’m grateful for this challenge. It’s woken me up. Things aren’t what I envisioned five years ago but things are seldom what we imagined in our youth.  I’m not only fine talking about it — I welcome it, I just want it off the table. I want to relax when I am with friends or family. I don’t want to hide anymore behind this veneer of false hope for the cure, I’ve faced my future, the only way for me to move forward is to have that same openness with others.

Chronic illness often gets filed behind other difficult-to-have conversations, with the idea that we’ll just brush it under the rug and pretend it’s not there. I recently had this reaction when a family member of a dear friend passed away — I couldn’t think of how to talk to her like before. I hurt for her and didn’t know how to just be around her, especially since I couldn’t help. The real answer is — there isn’t a proper way to be ready for conversations like these. In a business setting, I would just sit our employee down and start the conversation bluntly, explaining to the employee we can’t skirt the important issues just because they’re uncomfortable.

My proposal is we take the same approach with our community of chronically ill — just ask the question, have the conversation and make it happen. Chances are, those in the community of people with illnesses will be relieved and glad to have it finally out in the open so we can all relax and just be ourselves again.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 10, 2016
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