31 Days of CF: Having a Close Friend with CF

Photo courtesy of Alice Waters

Day 15 of 31

This is Alice Waters’ story:

Cystic fibrosis is one of those big, scary medical terms you grow up hearing about, but if you’re like me, you never knew what it was. That is, until I became a close friend to someone who has it. At first, I was like “Okay, so it’s a lung thing,” but oh … how wrong I was.

CF has attacked my friend’s body, not limiting itself to the lungs. I’ve watched her have too many surgeries in too little time. I’ve learned how years of coughing can affect the body in unpleasant ways. The biggest thing I’ve learned, though, is how hopeless this disease can feel. New treatment options are not covered by insurance companies, as if patients should be content with their current treatment options that put life expectancy for a CF patient in the 40s.

As someone who also struggles with chronic illness, I’m all too familiar with the feeling of screaming into the void about these issues, certain no one is listening and nothing will change but the thing is: it just has to. Cystic fibrosis patients can’t go on like this, and the rest of the world needs to be made aware.

I had the luxury of ignorance until this disease touched my life and someone I love. Now that luxury is gone and replaced with just anger — towards the medical system, insurance companies, “God” or whatever that big force is that makes it all happen.

I am sick and tired of watching my friend live like this, and it’s only been a year. I can’t imagine what a lifetime of it must be like and the general ignorance of this disease is maddening. I knew virtually nothing about CF until I knew someone with it and, even now, I feel terribly under-informed.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.