The value of building friendships with others living with CF

When I was 17, my appendix ruptured, requiring surgery. Because I had cystic fibrosis (CF), I was admitted to the pediatric CF unit. It was the late 1980s, and most CF patients were still children.

Every room had two beds. While the staff tried to give us separate rooms, there were times when we had to share. Little ones rolled around the hallways on Big Wheels and other rideable children’s toys, while older children played board games together. At the time, the risk of cross-infection wasn’t well understood.

I rarely needed to be hospitalized. But during that particular admission, I met someone my age, and we became friends. After we were discharged home, we became pen pals and took turns writing each other letters.

She was the only other person with CF I had gotten to know, so the connection was very special to me. When my friend lost her life to CF in her 20s, it was a huge blow and left me feeling alone in my disease. I didn’t know anyone else with CF until the inception of the Cystic Fibrosis Foundation’s (CFF) Adult Advisory Council in 2014.

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As part of the council, I attended executive meetings with other adults living with CF and provided input on CFF program initiatives. It was amazing to see people (literally, as video calls were now a thing) from all over the country. Their opinions and ideas were impressive and motivating. For the first time since my only CF friend had died, I felt the camaraderie and connection that only come from shared experiences.

After my time on the council ended, I kept in touch with a few fellow members on social media. When the COVID-19 pandemic hit, a group of us started meeting weekly via Zoom. It was a safe space where we could get to know each other and talk openly, to whatever extent we felt comfortable. Our mission, so to speak, was to meet each other where we were at. As we all know, CF is unique for everyone.

There were times when we collectively read a book and held discussions. Some meetings were deep, and others were lighthearted. Some weeks we’d play games or host virtual holiday parties. We took turns leading the group in something we enjoyed or specialized in.

This group became a lifeline during the pandemic. Not only was it a way to interact with others during a time of extreme isolation, but it also was a unique space of support. While healthy friends and family members surround us, often making up our central support systems, only others walking the same road can truly understand. It’s empathy versus sympathy. Our meetings provided a sense of validation and belonging.

Our group lasted a few years but has since dispersed, each of us returning to life and in-person socialization to various degrees, depending on our current comfort levels. We are all still connected on social media, though a few have become an integral part of my life, and I keep in touch with them regularly.

We don’t see each other virtually or communicate as often as we once did. But I will never forget the collective intimate relationship we formed over those years. Sharing our experiences, feelings, and perspectives had a significant impact on me.

There are many times when CF leaves me feeling different and isolated from my healthy peers. But building friendships with others who “get it” fills a part of me that nothing else can.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.