Education and Community: Lifelines for Living with CF

We are honored to share voices from the Cystic Fibrosis (CF) community as part of our blog series for CF Awareness Month. Today’s guest writer is Katie Fielding, a teacher, CF community leader, and adult with CF. In honor of our campaign theme, “Cross Out CF”, which celebrates the “lifelines” that connect and strengthen us, Katie shares some of the personal life lines she leans on for support and connection in her life with CF. To learn more about EE’s CF Awareness Month campaign, visit www.emilysentourage.org/crossoutcf.

I feel like I have lived several different lifetimes in my 40 years of living with CF, but I have had two constant lifelines during that time: the CF community and education.

When I was a child, living before the “6-feet apart” infection control rule (established in 2013 to prevent cross infection among the CF community), I was able to attend CF camps and CF “family days,” which allowed me to commune with my fellow CF family members in an intimate way. Playing games together, making new friends, sharing my thoughts and feelings in a safe space––these experiences were so important in helping me build positive self-esteem about living in a disabled body. I was able to connect with people that had the most in common with me, who understood what I experienced every day. Our CF bonds were forever. It was a point of connection––a life line––that would never break.

As my CF friend, fellow advocate, and founder of the blog Love to Breathe, Somer Love says, “blood is thicker than water, and mucus is thicker than both.”

When I was a young adult, my connections to others with CF went online as “six-feet apart” became my inevitable reality. I met my best CF friend Carly in a CF chat room when we were both 20. Until her lung transplant when we were in our late 20’s, she and I followed a very similar path with our health. That changed after the transplant, but she was still my CF confidant, the friend I leaned on through good times and bad until I lost her this past year.

Connecting with other people with CF at every turn is not a strategy for everyone, but for me it’s been a mental and emotional lifeline.

And now as a middle-aged adult (!?!), I continue to rely on the CF community for support and try to serve as a leader in CF advocacy when the opportunities arise. I have been so lucky in many ways with my health and I want the same for the next generation of people with CF. Connecting with other people with CF at every turn is not a strategy for everyone, but for me it’s been a mental and emotional lifeline. Being able to share my experiences with those who understand life with CF continues to be a source of comfort and strength. 

Education has also been a critical life line as it has given me a life outside of CF. While I was never eligible for perfect attendance awards, being a good student as a child was important to me. I liked being known for being smart in class––which was better than being the sick kid. And I was fortunate that academics were something I was able to keep up with despite hospital stays and other CF life interruptions. 

While I was never eligible for perfect attendance awards, being a good student as a child was important to me. I liked being known for being smart in class––which was better than being the sick kid.

Education would end up becoming a constant in my life, eventually becoming my profession. In the same way that I hope the CF community gets opportunities for improved health, I also hope that they receive support in educational and vocational opportunities. So many people with CF are getting life “back” or experiencing life in a different way for the first time because of the revolutionary new modulator therapies and other breakthroughs. It is important they have opportunities to fulfill themselves outside of their CF lives and be able to support themselves. People with CF have many different dimensions, and education lets them grow in all those different directions. 

Education and community have been essential in my life with CF. I guess it makes sense that they are at the heart of what I do and what I want for future generations. 

EE extends a huge thanks to Katie for her beautiful piece, a wonderful contribution to EE’s CF Awareness Month campaign! 

Special thanks to Vertex Pharmaceuticals, Inc. for sponsoring the #MyCFStory series.