By Georgia B.
I am a woman pushing 50. Yet, I am thrilled to be able to say that. One thing about having Cystic Fibrosis (CF) is that we wear our age as a badge of honor. We often have our answer ready, “Hi I’m Georgia from Ohio, I am 49 with CF.” We declare the number with such pride. And we should because our road might be the road less traveled but it is also the one full of hazards. It probably resembles one of those multi-terrain races or the really difficult obstacle course. But I never realized that greeting is unique to the CF community.
I volunteer as a patient partner on a Patient Centered Outcomes Research (pcori.org) project with a diverse group of stakeholders. When I first joined meetings, I used my typical introduction (see above). Then someone pointed out: “Wow that’s amazing! I have never heard someone declare their age with their disease.” I was dumbfounded. This was so consistent in the CF world. And this was my first volunteer position outside of the CF community. At first, I felt really embarrassed. I felt like I did not fit in. But then the project manager asked me why I did that.
I felt it was important to explain that all of us, healthy or not, should be proud of our age. We should tout our age as an accomplishment. Heck, even the healthy endure the tragedies of life. But as a person with CF, I like to state my age because I am a fighter. A fighter who has lost family and friends along the way. And now many with our disease see the first real glimmer of hope that one day everyone with CF will be able to say they are pushing 50 and then some.