You Know You Have CF When...

Let's play a game! What would you add to complete this sentence: “You know you have CF when... ?”

There are so many funny and painfully true answers to this question because living with cystic fibrosis is such a unique, albeit challenging, experience. I love reading lists like these because it reminds me that I am never alone in this life. So many people have experienced the same joys, pain, and just plain gross moments that come along with CF that we can all take a minute to laugh together. Here are 35 of my favorite “You know you have CF when...” answers:

“You know you have CF when...”

  1. You have never met most of your other CF friends in real life, only over screen
  2. You know where the phrase “sixty-five roses” originated
  3. You can explain the complexities of health insurance to all your friends after they get their first jobs
  4. You have cooked, cleaned, finished homework, done your make-up or eaten all while wearing doing breathing treatments
  5. You have been stopped by TSA and have to explain that your Vest is not a bomb or a life preserver but medical equipment
  6. You have a pulmonologist, endocrinologist, nephrologist, otolaryngologist, and gastroenterologist, but no PCP
  7. You know that a CF clinic appointment is actually an all day affair
  8. You can swallow 10+ pills at one time without choking
  9. Your appetite is bigger than all the grown men’s in your family
  10. You know how to silence a hospital IV pump
  11. You have no issue talking about poop, mucus, or other bodily functions
  12. You are considered middle-aged at 25 (and feel like it)
  13. You’re told by a complete strange to “stop smoking”
  14. After explaining CF, you’re then told by the same stranger you can be cured with essential oils
  15. You have to poop anytime, anywhere
  16. You know the phrase “tune-up” has nothing to do with fixing a car
  17. Wearing a mask and staying six feet apart was cool before COVID
  18. You realize cystic fibrosis-related diabetes is actually a whole other disease to deal with
  19. Your parents could locate you by your cough in the grocery store growing up
  20. You become your own salt factory in the summertime
  21. You have a complete wardrobe of “skinny clothes,” “less skinny clothes,” and “prednisone clothes”
  22. You move into the hospital like you’re moving into your (very expensive) brand new apartment
  23. You become BFFs with the local pharmacy staff
  24. You have your CF doctor’s personal cell phone number
  25. You look perfectly healthy until a cough escapes and ruins your whole cover-up
  26. You can remember the name, spelling, dose, and purpose for all 20 of your medications
  27. Gaining a few pounds during the holidays is celebrated
  28. You know which antibiotics treat which bug
  29. You were told you wouldn’t survive adulthood and now have no retirement fund
  30. You know what “spit or swallow” is actually referring to
  31. Your parents used to “beat” or “clap” you as a child
  32. You have removed your own IV, PICC line, or port needle after a course of IVs
  33. You know that Scandishakes are actually disgusting but you still drank them
  34. You’ve been paid to participate in a research study and know it’s awesome!
  35. You’ve blown out birthday candles in a plastic bow on a swivel chair

What about you?

What would you add to this list? Share with us below!

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