Life expectancy is a useful metric, but it doesn’t tell the whole story

I recently watched a film that depicted a harrowing scene between the protagonist, a prodigious graduate student, and his physician. In the scene, they sit in a sterile, halogen-lit corridor as the physician shares the devastating news that the student has amyotrophic lateral sclerosis (ALS). Much like cystic fibrosis (CF) in the mid-20th century, ALS had a horrible prognosis; the doctor informed the young man that he shouldn’t expect to live more than two more years.

This scene has stuck with me.

I was diagnosed with CF just a few weeks after I was born 31 years ago, but I didn’t receive my prognosis in quite the same way. I think the doctors told my parents that children with CF typically have a short life expectancy, with a best-case scenario at the time of living to about 31, according to the Cystic Fibrosis Foundation’s patient registry.

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Eventually, I grew older and more curious and read in a coffee-table book at a clinic in Ohio that people with CF have a shortened life expectancy. I was devastated. It prompted me to become more stoic and risk-averse, and I began to view myself as fragile. I effectively barricaded myself in my room and was no longer excited to go to school.

Life expectancy is a complex topic in the world of CF. It’s based on specific periods of time and population groups, essentially a snapshot of cross-sections within groups. It’s a valuable statistic, and the significant increase in life expectancy for many people with CF in recent years is one of the greatest success stories in science and medicine. It serves as a useful measure for assessing population-wide outcomes.

Understanding life expectancy is important for people with CF, as well as their parents and caregivers. While being aware that CF may lead me to having a shorter life than my peers was traumatic, it also shaped much of my life. In general, I think it’s had a positive effect on me. However, I remain open to the idea that it might’ve been detrimental as well.

That brings me to my next point: Learning about life expectancy can feel like a double-edged sword. It can be helpful, as it may foster a greater appreciation for what truly matters in life, especially when one feels they might lose it sooner than others. I had a narrower and clearer perspective on problems (and their relative insignificance) when I was frequently concerned about experiencing an exacerbation. Conversely, it can be harmful, creating a sense that life is predetermined, that the odds are stacked against us, and that there are few reasons to be hopeful.

Growing up with a chronic disease inherently imparts a sense of mortality, even if it isn’t explicitly communicated. That’s why the scene in the film resonated with me. Learning about my shortened life expectancy made me feel like my world had been turned upside down; it fundamentally altered my vision of the future. But two decades later, at an age I only dreamed of reaching, I’ve realized that while life expectancy is a statistic, I am an individual, and the best thing I can do for myself is to advocate for the life I deserve.

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.