'You're So Lucky You Have Mild Cystic Fibrosis'
“You’re so lucky you have mild cystic fibrosis.”
I‘ve heard many variations and phrasings over the years – but they all meant the same thing: how lucky I was that I “only” have mild CF.
Because I didn’t feel lucky.
I felt different.
There were nights and days I spent in constant pain, coughing until my head pounded. My ribs felt like they had been bruised from the inside and my back had nearly seized in pain. 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? Because I’ve always thought that was the single most terrifying night of my life.
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?
Having a mild dose of CF is a fallacy – a bit like saying someone is a only a little bit pregnant. CF is a progressive disease, and like any progressive disease you progress through the stages.
Everyone’s journey is different.
Some people with CF stay in the “mild” stage for years with minimal intervention. Others work damn hard to keep their CF in a mild stage. Some people go through a steady decline, and others decline rapidly.
Until people with CF reach the end stage of the disease it easy to think luck is a component. But like any invisible disease, people on the outside don’t see the hours of work put into maintaining our health.
So was I lucky I stayed in the mild stage of the disease until I reached my early 20s?
My good fortune was that Lady Luck gave me a family that invested hours into keeping me healthy. I underwent endless physio sessions, day after day – but those treatments didn’t happen by themselves.
Someone had to sit with me and physically do my therapy.
They never once let me off the hook.
Not when I was tired, or sick, wriggly or yelling.
Not when I was too hot or just plain couldn’t be bothered.
Not one single time.
Physio came before everything. Always.
I was lucky I had a family who never gave up.
Follow this journey Sandi Parsons, Proud Book Nerd.