It’s not just about the hospital bills…
I wish I could tell you that the cost of chronic illness is just medical bills — but for us, that’s not actually the case. We are blessed in a way many families aren’t: Jentri has two different insurances that cover everything she needs. And thanks to Children’s Flight of Hope, she and I can fly free to her appointments in Texas.
But even with that blessing, there’s still a cost — and it shows up in places you’d never think to look. Like when Brantleigh and Maveryk have to come along because Michael is working, and we have to pay for their flights out-of-pocket. Or when Michael comes with us, and we’re buying three extra plane tickets. Those are the obvious expenses.
The rest? It’s the hidden costs that add up the most.
The Hidden Cost: Time
Chronic illness is a full-time job on its own. Hours on the phone, hours traveling, hours in waiting rooms. Packing for appointments feels like packing for a small army. Even when I’m “off,” my brain doesn’t stop — Did she take her meds? Did I check her oxygen today? Did I call in that refill?
The Career Cost
Back when I worked full-time, I was constantly taking off for appointments, illnesses, and hospital stays. It was exhausting and stressful trying to keep up. Now that I’m not working, that weight isn’t on me — but it’s on Michael. He worries when we have to leave for Texas without him. He misses being at her appointments. He missed her last hospitalization — 17 days in Texas — because he was working in Connecticut. That’s a kind of cost that’s hard to measure.
The Emotional Cost
This is the one that runs me ragged. It’s the guilt, the fear, the constant worry.
I wake up in the middle of the night just to check her oxygen. I panic when she coughs and it sounds “pluggy.” If I put my stethoscope on her chest and hear crackles or rhonchi, my heart drops every single time — no matter how many times I’ve heard it before.
I fear what’s around the corner. I fear for the future——for her future? I fear the hospital. I fear missing something small that turns into something big. And then there’s the guilt — for the times I’m short-tempered because I’m exhausted, for the times my other kids have to wait, for the way every trip, outing, and plan is filtered through what if she gets sick? I fear what her life looks like growing up, as an adult and later in life. I wonder will she be able to have children…because yes PCD can affect that. I worry that she will stop doing her treatments as a form of rebellion. Just a whole lot of worry in my mind every single day.
It’s a mental load that never shuts off.
The Relationship Cost
Some people don’t believe she’s sick. They’ve never heard of her conditions, or they think, “She looks fine to me.” Chronic illness is invisible until it’s not, and ignorance can make you feel isolated.
Our marriage is strong — I thank God for that — but it’s not because this life is easy. We have a unique bond in how we handle the medical side of things, and having Michael as a respiratory therapist? That’s a blessing only God could have arranged. His knowledge, his instincts, his ability to jump into action — it’s priceless.
The Physical Cost (on Me)
Caregiving takes a toll I didn’t see coming. I put myself on the back burner all the time. I skip my own check-ups. I eat whatever’s quick between appointments. I run on caffeine more than I should. And at the end of the day, I’m so tired that “taking care of me” doesn’t even make the list.
The Things Money Can’t Measure
We still do road trips — sometimes even spontaneous ones — but they look different. We bring more gear, more planning, and a lot more “just in case” items. Vacations come with extra mental work: Is there another cystic fibrosis or lung patient near us? Was that cough I just heard contagious? What’s floating in the air that we can’t see?
And yet, we celebrate every win — because when life costs this much, joy becomes something you guard fiercely.
A good lung function test? We celebrate.
A day without stomach pain? We celebrate.
A week without the hospital? We celebrate.
Because those moments are priceless.
If you live this life too — I see you. I see the quiet costs no one talks about. And if you’ve never walked this road, I hope this helps you understand why it’s never “just the bills.”
Signed,
Kursti, Founder of Breath in Bloom Collective
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