I No Longer Want to Hide My Illness

In the last five years, relapsing polychondritis has completely redefined what a “good day” looks like.

Good days are “days that aren’t like the bad days.” I’ve had years of bad days – debilitating pain, troubled breathing, difficulty walking, loss of hearing, loss of vision, and other exciting symptoms and medication side-effects. I am ridiculously grateful that I now have a cocktail of drugs that has given back
80 percent of my life. The last seven months have been full of good days. I don’t take a single minute of this for granted.

Good days aren’t perfect, though. On any given day I can be nauseous from medications, be annoyed from the ringing in my ears, struggle to function in the world with hearing loss, adapt to life with damaged joints, or any combination of these and other challenges. I am truly not upset by any of this.

When I say, “My fingers aren’t working well today and I can’t do…” I’m stating a fact and not complaining. Sadly, those hearing me explain why I can’t perform delicate hand movements to accomplish a task are shocked and saddened by the loss. I undergo infusion treatment every four months and the side effects are pretty nasty.

When I make travel plans with people near those treatments, I will comment, “I will see you there but I won’t be able to eat with you because of the nausea.” This is my normal life and I’m celebrating that I can make plans and travel, but others are focusing on my symptoms and they are sad for me. If I try to explain to others how bad things have been and why I’m not bothered by these little issues, they get even sadder.

I hid my illness for most of these five years but I don’t want to do this any longer. I don’t want to continue to give, “I’m happy to be here!” answers to, “How are you?” when I’m reeling from medication side effects. Honesty hasn’t worked the way I expected, though. I expected that people would be grateful with me. Instead, they are sad and they pity me.

Do I go back to lying, though? Do I only give non-answer answers? I don’t think I necessarily have to go that far. I think I can tell the truth, the whole truth, and nothing but the truth to those closest to me. To everyone else, though, I’ll give less of an answer.

“I have other dinner plans that week,” would accomplish the same thing as, “I won’t be able to eat that week because of my medical treatments.” This is a kinder way to deal with people and keeps the conversation light instead of bringing it to a screeching halt and ruining their day. If folks ask for the whole truth, though, I will let them see and hear more of my reality.

Debby blogs regularly about her journey with chronic illness at Living with Relapsing Polychondritis: A Daily Adventure.

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