Today one of my colleagues asked the following question: “What do you wish people without Cystic Fibrosis knew about living with Cystic Fibrosis?”
I wish people know that not everyone has the exact same type of Cystic Fibrosis (those with variants or atypical types still exist). I wish people know it doesn’t just impact our lungs, like everyone thinks. I wish people knew CF isn’t just oxygen cannulas and coughs (I mean, it is… but it’s also Creon and bowel obstructions and sluggish colons and sinus disease and onward). It impacts us in so many ways, through so many organs, and across so many levels.
I wish that people knew I’m not as unreliable as my illness makes me seem. I hate missing appointments, changing plans, or breaking commitments, but sometimes CF gets in the way and the best laid plans fall through. It’s one of the more frustrating aspects of being chronically ill, especially when being unreliable is such a contrast from my personality and the way I want to be perceived by others.
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