I worry about how others perceive my daughter’s disease

My child is so much more than her cystic fibrosis

Jennifer Chamberlain avatar

by Jennifer Chamberlain |

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A banner illustration depicting a woman holding her baby daughter at a beach for Jennifer Chamberlain's column

“Is your child OK?” These perfectly well-meaning words from a stranger cut deep for me.

Claire had just finished having a coughing fit in public on a recent road trip when a woman approached us. She introduced herself as a pediatric nurse and explained that she was worried about the sound of my daughter’s cough. I told her that Claire had cystic fibrosis (CF), and I saw the instant recognition and ever-familiar glimpse of pity in her eyes. She then applauded my husband and me for how we handled it.

Despite her accolades, I felt uncomfortable and exposed. It was the first time a stranger had approached us about Claire’s coughing. Most of the time, people are unaware of Claire’s condition because of its invisible nature. At 4 years old, she has almost no outward symptoms, though these may manifest with disease progression and age. Generally, I consider it a positive thing that people can’t distinguish her as having CF.

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But this type of moment emphasizes how others may perceive Claire’s condition. Most days I forget how serious cystic fibrosis is. Maybe it’s a defense mechanism. Maybe I’m trying to convince myself that things are better than they actually are.

Then, something like this interaction brings me back to the reality of our situation, and it hurts. It always leads to me feeling upset and torn. Because as much as I want to protect Claire from the preconceived notions of strangers, I also want her to be proud and confident of who she is.

And she’s not just a child with cystic fibrosis. She’s smarter than any child I’ve ever met. I laugh with her more than anyone. She’s stronger and braver than most adults, including me. She has so many layers that have nothing to do with CF.

Still, I worry that cystic fibrosis is the only thing people will see when they look at her. And I’m even more terrified that this perspective will ultimately affect how people treat her.

To combat this, I try to focus on cystic fibrosis being only a part of who Claire is and who we are as a family. This is just one facet of our lives, not the center of it.

I don’t blame the stranger for approaching us, as it was a particularly scary event. I don’t blame her for being concerned or even sympathetic toward us. However, I do wish that I could tell every single person we interact with that Claire is so much more than her disease.

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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