Sharing about my CF diagnosis helped me find my village
Openness and honesty led to meaningful connections
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When my daughter started elementary school, I wasn’t looking for help. I was just another mom on the sidelines of a soccer field, handing out snacks at birthday parties, and setting up carpool schedules. But in the routine of those early school years, something special grew — a community I never expected, built partly on these simple words: I have cystic fibrosis (CF).
CF wasn’t yet written all over me in those days. My symptoms were manageable enough that I could keep pace, show up, and pull my weight. But as these neighboring families moved from acquaintances to genuine friends, sharing with others about my diagnosis felt less like a risk and more like the natural next step in becoming close. So I told them, and the world didn’t change — except that it did, quietly and permanently, in the best possible way.
What followed over the years was not pity, but a partnership. These parents stood beside me at Great Strides walks, year after year, showing up with sneakers and big hearts. Later, when hospitalizations became more frequent, they didn’t flinch or fade. Instead, they leaned in. They cared for my daughter — fed her, drove her, loved her — until my family arrived. During those harder seasons, I could see something in their eyes: an extra protectiveness and a tenderness that acknowledged what my daughter and I were both carrying, without ever making us feel fragile because of it. These people became my village.
That gift, the one they gave to my daughter, is something words can’t quite describe.
And through it all, they never once stopped treating me as an equal. They respected that I didn’t want to be handled gently or excused from reciprocity. I wanted to show up for them, too, and they let me. When life handed them hard moments of their own, I was there. That balance, the give and take, made everything richer and made the friendships real.
This support group is still here, five years after my double-lung transplant. Our children are grown and we are all older, but we remain close. While I was recovering from transplant, they supported my daughter and me, both physically and emotionally. I will always be thankful that they recognized the burden on my daughter.
I know not everyone has this. I’m truly fortunate to have a supportive mother and to have found these people. Not everyone with CF has a cheering crowd, and I don’t take that lightly.
If you have CF and wonder if you should open up, I want to share what it meant for me. Being open leads to connection. Most people carry their own hard things, and when you share, it can make it easier for them to share, too. That honesty can build the kind of friendship that helps you through tough times.
CF is heavy. But it’s so much lighter with people willing to help you carry it.
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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