Eight Weirdly Unique Experiences of Having CF

Living with CF can be wildly unique, silly, uncomfortable, and frankly, bizarre at times. Being in the CF community feels like a world of its own with its own language, inside jokes, and common experiences. There are so many moments that only my friends with CF or members of the CF community can relate to that the general public would think, “What the heck?” I love the humor CF can bring to our lives and I want to celebrate it!

Unique CF experiences

As a member of this special gang, here are some of the most weirdly unique experiences of having CF in my opinion.

1. The unique taste of saline

One of the world’s weirdest phenomena is the taste of saline after flushing an IV, PICC line, or port. How does the taste travel from your bloodstream to your mouth in a matter of seconds? CFers know this taste well.

You need my medical record number, pharmacy number, or port needle size and gauge, I could tell you. However, ask me my husband’s cell number and I have no idea. My brain is only filled with arbitrary series of medically-based numbers.

Color, amount, taste, blood, or thickness--nothing is too gross when you are discussing mucus with CFers. Mucus is the glue that holds us all together in the CF community, no pun intended.

Casually throwing back an entire fist full of pills multiple times a day is not your normal for a lot of people. However with CF, the more pills you can swallow without choking the cooler you are. Ultimately, there’s an on-going competition with yourself.

P-U-L-M-O-Z-Y-M-E. People living with CF definitely know how to spell, pronounce, and list the dosages of all their medications off the top of their heads. It’s a hidden talent and always a fun way to break in a new nurse.

Have you ever gotten out of the pool or bath and your hands looked like some kind of shrunk animal? Guess what! That’s something 80% of people with CF all have in common.¹ It’s rare like some bizarre superhero trait!

So many times have I been casually minding my own business in public when it's time to hook-up to IV antibiotics. Strangers really don’t expect someone to inject medications into their bodies in public and their faces show it. Shock. Surprise. Disgust.

The CF community knows how to have a horrendous coughing fit complete with red faces, tears, and sweating included. One minute you are coughing like an 80-year-old smoker and the next, you’re back to the conversation at hand. It’s a seamless and flawless transition.

What are your favorite weird or unique experiences living with CF? Tell us all about them in the comments below!