Phrases in the CF community that you don’t hear anywhere else

Something specific to the cystic fibrosis (CF) world is how we talk and the words we say. After living with CF my whole life, I’ve gained insight into our speech compared with that of the able-bodied world. That awareness dramatically grew after my double-lung transplant seven years ago. Some phrases that make perfect sense to my chronic illness community sound pretty weird to the outside world.

It’s quite humorous, really.

For instance, it’s normal for me to hear from medical professionals, family, and friends, “Looks like you’ve gained some weight. That’s awesome!” If you said that to someone who doesn’t have CF, though, how do you think it would go? Probably not as well. But because of my pancreatic insufficiency, I have trouble gaining weight. When I do, it is a victory and something to celebrate.

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I take pills on the daily. They’re my antirejection and CF medications, which my doctor prescribes. That’s not part of most people’s normal routine, and talking about it typically has negative connotations for people outside the chronic illness community.

One time when I was filling out a talk therapy intake form, a question asked, “Do you take pills?” I answered “yes” honestly and didn’t think twice about it. My therapist asked a lot of questions about that answer. I finally realized that the question was asking about illegal drugs, not prescribed medication. Whoops. It became a joke that I’m a “pill popper.”

Bowel movement discussions are fun — and yes, that’s sarcasm. “How many times a day do you go? Are they sinkers or floaters?” I get asked that question regularly by my doctor. If I’m hospitalized, medical professionals ask it daily. Imagine hearing that conversation on the street! Most people would be grossed out, I’m sure. In the CF world, though, it’s normal lingo.

“Do you have enough needles?” I get asked that by prescribing doctors and, before we go out to dinner, by my husband. It might not be something to ask aloud around people these days, though. I’m diabetic, so I use needles daily. Saying that in a grocery store, however, might get me reported.

These are just some examples of several common catchphrases in the chronic illness community. They typically concern subjects that would never come up in “normal” conversation. They’re almost always embarrassing, too.

Finding humor in my weird life

For years I was ashamed by how my body operated, even though I couldn’t control it. These conversations would be mortifying in public. I’d hush people who’d ask about my bodily functions and pretend the question didn’t pertain to me.

Believe me, it’s taken a lot of therapy and true friends to realize that those details of my life don’t make me any less valuable as a human being. Now I don’t care what people think. I embrace all the parts of me.

I’m able to laugh at all the odd things that my body does. It’s fun to connect with my CF and transplant friends who get it because we can laugh about the absurdity of our bodies together. There’s comfort in knowing that I’m not the only one.

Sharing laughs with those who truly know me has been such an incredibly healing journey. Yes, some details about my body are different from most. But realizing that no human body is perfect has eradicated the shame I attached to a disease that I didn’t choose. My body is unique, and I’m thankful that it’s mine.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.