“You’re So Lucky You Have Mild CF” and 5 Other Myths About Cystic Fibrosis

From sweating to tune-ups and cures

Sandi Parsons
Speaking Chronically

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Girl sitting on her Pop’s lap having a nebuliser
Sandi and her Pop in 1975 | Photo Credit: King Family archives

“You’re so lucky you have mild Cystic Fibrosis.”

I’ve heard many variations and phrasings over the years. They all meant the same thing, how lucky I was that I “only” had mild CF.

Lucky?

I was lucky to physio twice daily, add in a nebuliser or two, and a fistful of tablets. That’s lucky?

There were nights and days I spent in constant pain. I coughed until my head pounded. My ribs felt bruised from the inside, and my back nearly seized. If that was lucky, I didn’t feel it then, either.

The night I coughed up mouthful after mouthful of blood for hours on end. Was that when I was lucky?

And I sure didn’t feel that lucky when I was in end-stage respiratory failure on oxygen waiting for new lungs.

So how does someone who is supposed to be “lucky to only have mild CF” end up in respiratory failure?

Simple. CF is a progressive disease. Like any progressive disease, it moves through stages. Mild, moderate, severe, followed by end-stage respiratory failure.

Everyone’s journey is different.

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Sandi Parsons
Speaking Chronically

Sandi Parsons lives & breathes stories as a reader, writer, and storyteller📚 Kidlit specialist, dipping her toes in the big kid’s pool.