The Quiet Weight of Living with CF

During Cystic Fibrosis Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Joey Borgioni, a father, husband, brother, and person living with CF who reflects on the mental load, the daily discipline, and the ways CF quietly shapes not just his life, but the lives of those closest to him.

When people think about cystic fibrosis (CF), they tend to picture the obvious things: the cough, the treatments, the medications, the physical limitations. Those are the visible parts. But they’re only part of the experience.

What people don’t see is that the mental component of living with CF is almost as taxing as the physical part. It’s the constant awareness of thinking about what needs to be done on a daily basis to stay healthy, all while trying to live a normal life and be present with the people you care about.

What people don’t see is that none of it is particularly dramatic or heroic. By its nature, CF is a slowly draining disease that requires determination, perseverance, and discipline to manage long-term. Even when you’re tired, even when you’re busy, even when you’d rather be doing something else, it’s choosing over and over again to do the things that help keep you breathing.

They also don’t see that CF doesn’t just affect me. It impacts the people in my life, often in quiet, non-obvious ways, especially those closest to me.

As a brother of someone with CF, my understanding of the disease was shaped side-by-side with him. For most of my life, he was the only other person I knew with CF. We went to appointments together, did treatments before school together, even fought over the bathroom after road trips because of the GI issues that come with CF.

There was a certain naivety in that shared experience, a sense that this was just normal. It wasn’t until he passed in 2019 that the ruthlessness of CF became fully real to me. 

In less than a month, we went from watching Philadelphia Eagles games on the couch together to him being gone.

That is the reality of CF. The future is uncertain. One bug or infection could mean extended hospital stays or worse, in the blink of an eye. Losing my brother made me acutely aware of the fragility of life, especially life with CF. As cliché as it sounds, it helped me to realize not to take a single day for granted.

As a son, I’m deeply appreciative of the time and sacrifices my parents made raising two kids with CF. The assistance with breathing treatments, airway clearance, enzymes (helping to digest food due to pancreatic insufficiency), doctor’s appointments, exercise, hospital stays, and more. As an adult, my awareness of, and commitment to, my health is directly tied to being part of a family that has already experienced loss from CF. While my brother’s absence isn’t always spoken about, it’s always felt. I try to be mindful of my parents, knowing the pain of what they’ve experienced and how much they prioritize my health.

I’m deeply devoted to working my hardest to spare them from experiencing more loss than they already have. That feeling drives me to stay as healthy as I can every day for them.

As a husband, I know I ask a lot. My wife is my strength. She has an up-close and personal view of the daily realities of CF- the treatments, the medications, the coughing fits during the night. Even the small things, like nebulizer strap marks showing up in our wedding photos. 

Beyond that, I asked her to walk through the IVF journey with me, something many couples affected by CF face, as most men with CF are infertile. This brought its own physical, emotional, and financial challenges; many of which fell on her. She never complained.

She understood what our life with CF could look like and has met every challenge head-on. I don’t take that for granted, and I’m incredibly lucky to have her beside me.

Being a father is probably where I feel the impact of CF most. There are moments when I’m doing treatments while holding my daughter and feeding her a bottle, trying to be present in both roles at once. I feel it in the mornings when I’m up at 5 a.m. to swim because I know it helps keep me healthy, even though it means missing time with her before work. 

And then there are the harder thoughts; the ones about the future. The reality that no one likes to talk about is that historically, people with CF have faced significantly shortened life expectancy. There is a real possibility that I won’t be around to see my daughter graduate high school, or dance with her at her wedding, or see her grow up and chase her passions.

I’m aware of how far treatments have come and how much progress has been made in the medical field, and organizations like EE that are constantly fighting to extend lifetimes. But I still don’t take time for granted. The constant awareness of the uncertainty of the future and the fragility of life push me to soak in every moment I get.

All of this is to say, the weight of CF is not something I carry alone. My close friends and other family members also feel the weight of CF in their own ways. I know it can be difficult and, at times, burdensome. More than anything, I’m grateful. For their patience, their strength, and their willingness to walk through it all with me.

It seems like people with CF have an uncanny ability to take the difficulties in life and use their challenges to see the world through a different, more positive lens. You learn to prioritize differently.

The small, ordinary moments carry more weight: going for a walk, sitting at the dinner table with family, spending time with friends, and celebrating another birthday. People with CF face overwhelming challenges, yet find ways to transform that adversity into a deeper appreciation of life and commitment to living it in a fuller, more meaningful way. 

That’s what people don’t see about CF.

About the Author:

 

Joey Borgioni is an individual with CF who lives in Downingtown, PA, with his wife, daughter, and two cats. He is a Planning Specialist at Hydraterra Professionals, where he focuses on environmental and wastewater solutions. Since 2024, Joey has been involved with Emily’s Entourage, supporting efforts to advance research for CF. Living with CF, he finds that swimming and spending time with friends and family play an important role in maintaining both his health and overall happiness.