I’ve Found Powerful Camaraderie in the CF Community
Two of the most powerful words in our vocabulary are “me, too.”
Many of us tend to isolate ourselves when our circumstances are challenging. We turn inward rather than outward because we feel shame about what we’re going through. When we find that person or group of people that gets it, the sense of relief is radical.
Growing up, I didn’t talk about having cystic fibrosis. My parents spared me the label at school to prevent bullying. I was relatively healthy until I went to college, when it became increasingly difficult to hide my booming cough and absences from class.
Fast-forward to my late 20s, and doctors thought I should be evaluated for a double-lung transplant because of my erratic CF. Hearing the details of this process felt like I was continuing my ride on the CF roller coaster. But it was so much bigger than that. I knew I needed to talk to others who already had been through this.
I dove headfirst into the CF community, first by joining Facebook groups. I had no idea there were people like me out there who struggled, conquered, and persevered with the same disease I fought. They lived fully, they passed away with grace, and they did everything in between. They inspired me to settle into myself and own my CF — to embrace it, even. These people taught me it is OK to be who I am, fully.
The revelation that I am not alone on this CF journey and in my transplant life is indescribable. I have met my closest friends within this community — those who have walked alongside me during my toughest battles (the transplant process) and my darkest days (when I’m battling depression and anxiety). They have shown me how they’ve lived through hell and come out breathing new life. If they can do it, so can I.
One friend, Shaun, has become like a brother to me. He messaged me after I posted in a Facebook group that I had begun the evaluation for transplant and wanted to know more about other people’s experiences. We became instant friends, and he coached me through the entire process.
Shaun messaged me every day when I was fighting for my life on high-flow oxygen, and he encouraged me to keep going. He helped me focus on the long-term view of living rather than the short-term view that I was dying. About six months after my double-lung transplant, I met his wife, Andrea, and him. It was surreal to see each other in real life.
I carry these memories with me and look forward to the ones I still get to make with my closest friends. I haven’t met many of my friends with CF in real life — yet. This doesn’t negate our close connection or our ability to share details of our lives, despite living on opposite coasts.
There’s a different level of intimacy when one actually knows what it feels like to experience the idiosyncrasies of our disease and everything that goes along with it. We understand the sweet victories, heartbreaking losses, and dark humor that carry us through. This connection is powerful beyond words.
If this disease has taught us anything, it’s that connecting on an authentic, vulnerable level is what makes our lives even richer than the simple gift of a deep breath.
When we find ourselves sitting in a dark place, we hold space for one another to feel the magnitude of our situation, because we know that’s what it takes to heal and move forward. We also walk together in the light. We celebrate each baby step of progress. We know this journey on such a profound level that walking it with others who are going through the same stuff just makes sense.
We connect beyond just the commonality of having CF. We connect because we love to write, our personal growth games are strong, we’re book nerds, and so much more.
We talk about God while crying healing tears over hibachi. We share intimate details of our trauma over coffee and doughnuts. We passive-aggressively show up in one another’s hospital rooms because we see through the “I’m fine” charade. We push our IV poles and oxygen tanks down the same hospital hallways and know with a moment of eye contact the battles we’re fighting.
We also know we are never alone on this journey, and that will always be the greatest comfort.
I’m so grateful I took a leap of faith and wholeheartedly joined this community. It truly is the most beautiful gift. I’m so honored to have incredible friends. Thank you all.
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.
Gisele F Lapointe
To Lara, in Vermont
I am so happy for you to be living at a time when there is so much good news for CFers. My own daughter (mother of 3 young children) died at the age of 43 in 2001 after a double lobe transplant in 1999, too late for a double lung. With the medications, the treatments getting better and better today's patients have the chance to live longer and longer, and that rejoices me. I am presently writing the story of my life as an hommage to her so her 3 children will get to know what she went through. Best luck to you.
Thank you for sharing your story Gisele, I am so sorry for the loss of your dear daughter. How beautiful to honor her children with writing hers so eloquently. I look forward to reading it! Thank you for your kind words, sending you lots of love and healing hugs. xoxo