Connecting with my cystic fibrosis community gave me hope
After a long break, a virtual discussion with CFers was just what I needed
I recently agreed to facilitate one of the Cystic Fibrosis Foundation’s CF Circles, which are virtual small-group discussions about a specific topic. The focus of this particular gathering was “Living with cystic fibrosis (CF) over 40.”
After my double-lung transplant in 2020, I decided to take a break from many things CF on social media. It wasn’t that I didn’t want to hear from friends and others living with CF; I just felt so immersed in the disease during the years when my lung function drastically declined and I had to wait 21 months to receive my new lungs. After the surgery, I slowly backed away from CF events and notifications. The luxury of stable lungs allowed me to take a much-needed mental health break.
It’s been more than four years since I’ve participated in these types of events and discussions, so I’m not sure why I even received the email request to facilitate a CF Circle discussion. I’m also not sure why I said yes. But I’m so glad I did.
A much-needed dose of hope
After I joined the Zoom meeting, someone shared that this was the largest attendance of a CF Circle meeting to date. Seeing so many faces pop up — 89 in total — was terrific. There were two small group chats for those in their 40s, two groups for those in their 50s (I facilitated one), two groups for those in their 60s, and one group for those 70 and above.
The group I led had seven people in their 50s at various stages in their journey with CF. One person had received a double-lung transplant a year and a half ago, while another had been living with transplanted lungs for 20 years. One participant was ineligible for modulator therapy and struggling with their CF lungs, while others reported doing well on modulators.
The questions and conversation flowed. We spoke about the lack of treatments and therapies available during our childhood years and how far we’ve come anyway. We touched on people with CF we’d met during our hospitalizations growing up, and how it feels that many of them are no longer with us. The vibe was gentle and supportive. We encouraged each other before magically transporting back to the main gathering to say goodbye to everyone in attendance.
The CF Foundation coordinator reminded us again that we were the largest group to show up so far, and that fact has stuck with me. Today, people with CF have a shorter-than-average life expectancy; when most of us in attendance were born, it was widely considered a fatal disease. The fact that the largest CF Circle group was comprised of people who weren’t expected to still be alive today is fantastic. The strength and resilience in those chat rooms was astonishing.
For the rest of the evening, I felt much more at ease. Though I had needed a mental break from CF, I realized that I had begun to lack hope, perhaps from stepping too far back. My community gave me a massive dose of hope that night.
It’s no coincidence that I was there. I believe God put the opportunity before me. I can’t explain it any other way, as attending this type of event is rare for me these days.
Nonetheless, the bottom line is that my life has been challenging recently. The brave, intelligent, resilient, awe-inspiring community of folks living with this horrific disease lifted my spirits in a way that no one else could.
Thank you to all of you fighting CF every day. I have missed you and am so grateful to you for showing up.
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.
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