My Invisible Illness Is Valid

If I had a dollar for every time I’ve heard, “But you don’t look sick,” or “But at least you look good,” I’d be a millionaire by now. Can you relate? Living with a chronic, invisible illness that ravaged my lungs for 30 years tells me otherwise.

I heard things like this before my double-lung transplant four years ago, even when I was wearing oxygen. I still hear it as I struggle with complications from the transplant. It’s disheartening.

When people say things like this, they probably mean it as a compliment. Their intentions are pure, I think. But to me it feels like they are saying, “Even though your life is falling apart, and your health sucks, at least you look good.”

I shouldn’t have to prove that I am actually sick because I don’t look the part. Just because my illness is invisible, doesn’t mean that it’s invalid.

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Most of the time, I know that these people mean well. They are family members and friends and medical professionals who have walked this journey with me. I know they want to make me feel better about myself when my health sucks.

But the “at least” is like sugar-coating my complicated health and finding the silver lining I’m not ready to see.

Perhaps because so much value is placed on personal attractiveness, that becomes an easy way to measure well-being. But that’s not where I am. My physical appearance is often the last thing on my mind. Living with a chronic illness, even if it is an invisible illness, most days my goal is just to survive.

And the truth is, looking physically better doesn’t always make me feel physically better. Mostly, it makes me feel worse because it invalidates what I’m going through. Being told I look good after I’ve chosen to share the intimate details of my health with someone feels like a negation of everything I’ve just said. It’s like a sucker punch to the gut.

Sometimes, it makes me feel crazy when people respond skeptically about how I’m feeling. When they say I “don’t look sick,” it feels like they think I’m lying about my health. When they comment on my outward appearance, it’s almost like they think it might comfort me to be told that I don’t look sick. As if looking good makes feeling terrible easier.

Looking healthy, but not feeling healthy is hard. The most frustrating part is that I work so hard every day to be as healthy as I can. But looking good and feeling good are on completely different levels. And I don’t give two hoots about looking good if I’m not feeling good.

Maybe I need to take the brave risk of being vulnerable and tell others the truth. Maybe I need to say how incredibly hurtful it is when people reply with, “But you don’t look sick” after I’ve just given a detailed account of everything that’s wrong with my body. Maybe I need to be more authentic with others rather than cringing inward and saying, “Thanks,” but not really meaning it.

Being totally healthy will always be my life’s goal. But that isn’t my reality, and won’t ever fully be true. I will always have to maintain my health on every level while I live in a body with cystic fibrosis and transplanted lungs.

Believe me, if I wore every ailment on my sleeve that my innards experience, it wouldn’t be so pretty. But for now, at least I look good, not sick, I guess.

Sigh.

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