31 Days of CF: My Complicated Relationship With CF

Photo courtesy of Kristy Ann O’Connell

Day 13 of 31

This is Kristy Ann O’Connell’s (@kris_anno) story:

I have a weird relationship with CF these days. While my health has never been better, memories linger, emotional and physical trauma linger, and fear lingers.

I’ve been on modulators since 2012, and since then, I’ve slowly healed and detached myself from all of the adversity that comes with cystic fibrosis, but the body and soul don’t make it easy to fully let go. I’ve tried to set most of the pain free and convert it into an energy that drives me to worry less and instead raise awareness and fight for a cure.

At the same time, though, another CFer (thanks, Morgan!) said it best: There was always something about having CF that made me feel “special” — a feeling that I’m worried I’ll lose. When you have CF and are going through the battles, you have a drive to fight and live your life to the fullest. You are hyperaware of how beautiful it is to be alive and how silly the little things in life that get people down can be.

As I feel less and less connected to my former self, I have begun to find myself taking for granted the same things I once criticized people for. In this way, I sometimes have to remind myself of who I once was and what was once in store for me.

In some ways I feel enlightened by my relationship with cystic fibrosis. I feel so lucky to have science on our side and to be taking a drug that has changed so many lives for the better, including my own. In an even stranger way, I feel grateful for my experience with CF. It has given me an independence, a perseverance, and an intrinsic motivation to make the most out of my life, and I’m so very proud of that.

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 read the full series.