The unique bonds among parents in the cystic fibrosis community

As priorities and demands change with CF, so do many of caregivers' social needs

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by Jennifer Chamberlain |

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Before cystic fibrosis (CF) entered our lives, my social circle consisted mainly of my elementary and high school friends. I was the last one of our group to have children and the first to have a child with a disability. While I was happy to know my friends were having typical motherhood experiences, I felt alone.

I couldn’t relate to my friends as much anymore. It wasn’t anyone’s fault; it was merely because my life had taken a different path when my daughter, Claire, was born. My days were now filled with breathing treatments, medicine administration, and doctor appointments. I was still the same person, but my priorities had shifted dramatically. So did my relationships.

It wasn’t until I started meeting other CF parents that I realized how much I needed to engage with others in our position. Cystic fibrosis, after all, is a complicated disease, and CF parents are tasked with learning about care regimens, infection control, and hospital procedures. These aren’t exactly topics for small talk, or even interesting to most outside the CF community. But we think about these things constantly.

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Having a child with cystic fibrosis doesn’t just result in a new way of thinking. We live our lives differently now. We go to great lengths, for instance, to protect our daughter from illness. From an outsider’s perspective, these lengths may be perceived as overly dramatic, overprotective, or just plain crazy. But those in the CF community know the intricacies and heaviness of this disease. There’s something special about relating this way to another parent.

The value of these new friendships was especially apparent when the pandemic hit in 2020. We were able to connect and lean on one another during that intense period of isolation. While the whole world was asked to slow down and isolate, most people couldn’t relate to the depth of our fear as CF parents. These community connections, both in person and online, proved crucial for my mental health during that time, and they’re still vital to this day.

Sharing stories about our children or getting tips always feels like a breath of fresh air. I feel seen and heard in a way that’s hard to describe. Having friendships with other CF parents has given me the confidence to be more open about Claire’s disease. It also reinvigorated my drive to learn everything I possibly could from the best resources, which often turn out to be other CF parents.

At the beginning of our CF journey, I didn’t know how badly I needed friendships like these. I still worry that I’m alienating my longtime close friends by turning toward my new friendships more. But I’d like to think I can maintain old friendships while building these necessary other connections in the CF community. Both types of bonds I cherish for their own reasons, and I hope they last forever.

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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