Cystic fibrosis misconceptions: “are you still sick"

“Are you still sick?” Lucy asks.

My co-worker, who, by all definitions, is a joy to work with stares at me with wide eyes and glossy lips. She never asks personal questions. She always has a pouty face ready when you tell her you’re upset, and she’s got a lovely “ooh and aah” when someone shows her a picture of a baby or a puppy. In summary, she’s great. And she views the world with this same greatness.

For example, if someone is upset, they will eventually get happy. If something bad happens, something good is right around the corner. And, if someone gets sick, they will always get better.

My co-worker has a limited understanding of the chronic genetic disease that is cystic fibrosis. She has no idea what it is like to have cystic fibrosis. I’ve tried to explain to her that I was born with this affliction, that it does not go away until I die. In a weak Game of Thrones-voice, like the meme, I even joked, “One does not simply recover from Cystic Fibrosis.”

Seeing her expectant face, I think about saying this again to her. But I pause before speaking, uncomfortable with the clipped responses I’m supposed to utter. Muttering a fine or a nope would be so simple, but I can’t seem to dig deep for the lies that I use when telling cystic fibrosis stories to co-workers.

“You don’t look so sick anymore,” she offers into our silence.

And that’s when my mind rattles off the responses I want to give her:

“I’m so sick like pustules in the nose rubbing Mupirocin cream three times a day after swabbing off scabs with hydrogen peroxide sickness.”

OR

“I’m so grossly sick like it feels normal to ooze, soggy stuffed tissues in pockets, hoard antibiotics bottles because supplies always dwindle kind of sick.”

OR

“I’m so familiar with sick like I wouldn’t know what to do in a night not waking soaked in fever sweat, or how to survive a day without choking on the excess fluids my body clogs itself with, watching parts slough off in clumps, yellowed mucus-filled phlegm sickness.”

OR

“I’m so bored sick like I’m an act of decaying without ever dying, always preceded by a warning of chest tightness, mistaking breathing as involuntary, ungrateful for the work this precious body has to do, not valuing its complex layers of sick.”

OR

“I’m so over having to make up positive cystic fibrosis stories so that people will feel comfortable avoiding awkward conversations about my reduced life expectancy.”

OR

“I’m so very sick like the dysfunction of organs causing malnutrition and itchy skin despite being force-fed through a tub, tan slushy pre-masticated goo even a baby could process, the kind of sick that just doesn’t end despite the pills and inhalers, the injections and nebulizers, the scopes and the excisions confirming all the internal sick.”

OR

“I’m so sick of forced functioning through this infected disease state like the sickness is me.”

But I didn’t say any of those things. Lucy smiles at me, clearly disturbed by my inability to give her the response she wants. A response that will make her feel comfortable.

Lucy reaches forward to hold my shoulder. Looking me in the eyes, still smiling, she says, “You really do look great, like you weren’t even sick at all.”

“I’m still really sick, Lucy,” I say. “Why can’t you accept that I am not getting better?“

She blinks at me, thrown off by my unfiltered candor. I can see her brain working to put together facts like I had shown up to work, I was wearing make-up, and my hair was brushed yet I was telling her I was still sick. These things seemed to confuse a lot of people in my life.

“Oh, it can’t be that bad,” she laughs, releasing my arm.

“Lucy, if I had a band, I would name it ‘Perpetual State of Sick.'”

She laughed uncomfortably. Shifting on her feet, she shrugged her shoulders as she asked, “What would you call your first album?”

“Infinite Nausea,” I answered without hesitation.