Knowing My Life Expectancy Was Harmful, Not Helpful

Knowing my life expectancy due to cystic fibrosis (CF) used to play tricks on my mind. Who am I kidding? It still does sometimes.

For the first several years of my life, CF was known as a childhood disease because many people didn’t live into adulthood. With medical advancements and treatments, the life expectancy has changed dramatically as people with CF are now living well into their 40s and beyond.

For me, CF had been a death sentence since I popped out of the womb in 1986. It wasn’t until after my double-lung transplant five years ago that I started to unpack the mental repercussions of how the constant talk about my life expectancy has affected me.

Growing up, I felt the sting of the words “life expectancy” during just about every doctor’s appointment. The life expectancy for CF brought pain that was evident in my parents’ eyes. I watched as they held on to every word of the doctors, who promised that a cure “was right around the corner.”

Recommended Reading

October 7, 2022 News by Marisa Wexler, MS

Gene Editing Corrects CF Mutation in Multiple Organs All at Once

Mind games

As I got older, the life expectancy changed, and people with CF were living longer. And as I graduated from pediatrics to adult clinics and moved to different locations for college and adulthood, each new doctor said the same thing: “So the life expectancy is now … .” They would trail off, or maybe I tuned them out. Either way, I hated “the death talk.” It was traumatic to be told from a young age that I was going to die.

I used to think that once I hit the life expectancy age for CF, I would suddenly drop dead on my birthday. But I hit 10 years old, then 13, 18, 23, and 30, and I’m still standing. How exactly does this work? The mind creates crazy stories when rumbling with existential questions like “When will I die?” In the back of my mind is a weird tension between living amid extreme unpredictability and awareness of my mortality.

The gutting reality of this knowledge is that it’s robbed me of so many life experiences. When I was really sick, rather than enjoying the moment, my constant thought was, “Is this the last time I’ll ever experience this?” I was consumed with questions: When will I die? How much time do I have? Will I get everything done that is in my heart to do?

This preoccupation with death brought me nauseating anxiety and sunk me deeper into depression. Every twinge in my body alerted my anxiety that this might be the end. Talk about hypervigilance. It was depressing to see others go about their lives, seemingly without a care in the world, while I had to think about dying. I was really good at hiding the sadness with a smile and appearing as if everything were OK. Nobody understood the weight of knowing my own mortality.

I’ve asked numerous people who have life-threatening conditions how knowing their life expectancy has affected them. No one has said that it’s helped to ease their minds. I’ve seen how that knowledge has hurt them. It’s created anxiety and intrusive thoughts, and people have acted out of character as a result. It’s created urgency for choices that should be carefully calculated. Relationships, careers, and other important life choices shouldn’t be rushed because death might be imminent.

Undoing the damage

It’s taken a great deal of intention to reverse the damage that’s been done. I’ve worked through the traumatic impact on my mental health in therapy. Sifting through what’s true for me and shifting my focus to living has taken time. Unraveling the tightly wound heaviness of constantly thinking about death has been a painful process. Living with the regret of choices affected by my imminent death still hurts. But I’ve found healing within my community. There’s power in knowing that I’m not alone in carrying this burden.

It also helps to put life expectancy into perspective. Predictions amid life-threatening illnesses have rarely been accurate. Doctors and researchers who calculate these numbers are human; they’re not God. They don’t know exactly when any of us will die. The truth is, nobody knows when their last breath will be.

And maybe that’s the life lesson here. It wasn’t until I released control of the date of my death that I learned how to fully live.

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.