It’s time to stop obsessing over life expectancy in CF

“You might live long enough to finish college, maybe even get married, but …”

I imagine this is what the textbooks used to say about cystic fibrosis (CF) when I was in college. While I heard such things at medical appointments, I refused to let that narrative define my life. Yet many medical professionals seem to consider this a necessary conversation with patients.

Not with this patient, though.

My parents never raised me to believe I would die young. Living with CF came with many unknowns and a great deal of ambiguity, but my parents instilled in me an enduring hope that new treatments would emerge and a cure might be found in my lifetime.

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Constant discussions of life expectancy at the CF clinic planted the idea in my head that I would die young. That number was hurled at me like a baseball, hard and fast. It often felt like I had a target on my forehead and I was just counting down the days.

This information is offered freely to patients, but it’s usually not requested. Its detriment is rarely acknowledged, and from my experience, and from those I’ve spoken with, this is all too common.

This is why many people with CF once avoided planning for the future, and why some, myself included, still struggle with it. I’ve heard medical professionals discuss how patients chose not to attend college or pursue careers because they believed their lives would be cut short. If you’re repeatedly told you’re going to die, what future can you realistically focus on or prepare for?

Throughout all my conversations about life expectancy and disease outcomes, I’ve never met anyone who found this information helpful. No one ever says, “I’m so grateful someone told me how long I have left to live.” It’s an absurd notion. Instead, this dark cloud has only limited people’s ability to truly live their lives.

Challenging the traditional narratives

I wonder how these conversations would feel if the roles were reversed. How would the people delivering these grim statistics handle hearing them about themselves? Perhaps the dialogue would shift if they truly understood the toll that emphasizing life expectancy takes on how people think, speak, and live, and on the anxiety and depression it breeds.

Rather than projecting a death sentence, it’s time for the medical community to focus on how patients can live well. Multiple case studies highlight the power of hope in shaping a person’s experience with diagnosis and prognosis. Instilling hope is just as vital as honesty about someone’s health; the two go hand in hand.

Human beings aren’t robots. Assuming that constant discussions about prognosis won’t affect them is inhumane. Imagine if, instead of focusing on life expectancy, we centered conversations on future possibilities. What if a holistic approach replaced reducing lives to mere statistics? I can only imagine how dramatically perspectives would shift for everyone involved.

Anyone can be in a car accident, receive a life-altering diagnosis, or pass away unexpectedly. None of us knows when our time will be up — this is a universal truth. So the focus shouldn’t be on death, because life is meant to be lived.

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.