Must we always focus so intently on CF life expectancy?

In this column, I want to discuss something that’s been bothering me for a long time, so I’ll just go ahead and say it: I despise the fact that the topics of age and life expectancy are such a prominent feature of the cystic fibrosis (CF) identity.

This may be a controversial statement, but it’s my personal opinion, and it’s been weighing on me for years.

I don’t mean to upset or offend anyone, and I’d appreciate feedback and other perspectives that might help me shed this abhorrence.

Growing up before the internet, I had only known one other person with CF. We talked on the phone and became pen pals, mailing letters to each other primarily about life beyond CF. About 10 years ago, I became much more engaged with the CF community online, and I quickly realized a pattern: Without prompting, most people introduce themselves by stating their name immediately followed by their age.

I was initially taken aback by this. It’s not how introductions are made in other situations I’ve experienced. In response, I followed suit, feeling awkward and confused. I felt like I had missed the memo about our ages.

I’m aware that sharing our ages helps us recognize the progress we’ve made in managing and treating our disease. CF was historically known as a fatal pediatric disease. When I was born in 1971, my mother was told that CF life expectancy was 12 years. It is now a life-shortening disease due to the progress in scientific research that continually pushes life expectancy higher. The life expectancy of a baby born with CF today is 50.

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As I joined various online CF groups and new friendships grew, I became more desensitized to this practice. But I still notice a vague discomfort in the pit of my stomach when it happens. How has it become such a conditioned response for our community? And why does it bother me?

Another common theme in our community is that we don’t want CF to define us, which I agree with. But by including our ages in our introductions, are we being true to that statement? Or is it a mixed message? Or are we merely sharing information? Maybe we’re sharing hope and inspiring each other with how long we have lived. Do other groups with life-shortening diseases also do this?

Banishing the stress and anxiety

It is upsetting to me that information about life expectancy is so easily accessible now compared with when I was young. Our minds absorb that information, which affects us mentally, emotionally, and physically through the mind-body connection. I believe the stress of that information wreaks havoc inside our bodies. Anxiety and depression is common in the CF community, which doesn’t surprise me, considering we’re living with the information that our lives won’t be as long as those who don’t have CF.

My mother did not share this type of information with me when I was growing up. I realize now what a gift it was for me not to carry that psychological burden, especially as a child. Everyone’s CF is unique, and I find great hope in that. Many factors determine how quickly CF will progress, how we will recover from exacerbations, and when we will die.

I realize that many people have died from CF way too early, including my first CF pen pal. It is horrible, and those of us who are living fight extra hard in honor of the ones we’ve lost. But here’s the thing: No one is guaranteed tomorrow, not even the healthiest person in the world. So why, in addition to the health battles we endure, should the CF community  carry the constant psychological burden that our lives may end early?

I am so thankful for the hard work, dedication, funding, and research that’s happened to find new treatments and one day, a cure. For these reasons, I understand and appreciate the use of life expectancy as a marker of progress. We have come very far since I was born.

But for the children and adults now living with CF, I hate that life expectancy is still such a prominent and focused feature of this disease. It creates fear. It is a constant reminder of our medical fragility and the unpredictability of the disease we fight so hard to live with.

As we continue to move forward with CFTR modulators and genetic therapies, my hope is that we as a community can break free of announcing our age in connection to our identity with cystic fibrosis. That way, we will no longer have to be so focused on how many years we have survived and instead talk about how well we live with it.

Again, I would love to spark a discussion in hopes of calming my displeasure with this topic. Please share your thoughts in the comments below.

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.