With advancements in cystic fibrosis treatments, individuals with the condition are now living longer and healthier lives, often well into adulthood. This progress has opened the door for many to pursue careers, build relationships, get married, and start families. But there is a unique and often overlooked group in the CF community that continues to face significant challenges — the spouses and partners of people with CF.

Unlike parents or caregivers who are often educated about their child’s diagnosis from day one, partners frequently enter this world suddenly and with little preparation. When I first met my husband, Ty, I was already working as a respiratory therapist. I thought I understood CF. But even with my clinical knowledge, nothing prepared me for the emotional and practical realities of life as a CF spouse.

In the early days of our relationship, I quickly realized how much of my understanding of CF was textbook only. I knew the basics — the disease process, the management protocols, and the fact that hospitalizations were part of life. But knowing something clinically is vastly different than experiencing it personally. When Ty had his first hospital admission just three months into our relationship, my world shifted. The fears I witnessed as a care provider for others suddenly became my own reality.

I remember clinging to him in those early hospital stays, feeling compelled to stay by his side every day. Looking back now, I laugh at how tiny the hospital rooms were and how much we got on each other’s nerves. But at the time, I needed to be there, to reassure myself that he was okay. That fear, though, wasn’t something I could easily explain to others.

Friends would ask, “He’s in the hospital again?” Their well-meaning but uninformed questions only added to my stress. But I didn’t want to burden Ty with my worries; I knew he was already carrying enough. I needed someone to talk to — someone who understood.

At the time, most of my connections in the CF community were with parents of children with the disease. They were incredible resources and offered me a lot of support, but our experiences weren’t the same. Loving a partner with CF is different. There’s a unique balance of being their advocate, their partner, and often their caregiver. Something as simple as encouraging treatment compliance looks very different for a spouse than for a parent.

Eventually, I stumbled across a blog written by another CF wife. It was like a lifeline. Her words resonated with me in a way that nothing else had, and we quickly became friends. Through her, I connected with others — women like me who were learning to navigate life as CF spouses.

These friendships became my anchor. They provided a safe space to voice fears I couldn’t share elsewhere, like my worries about not growing old with Ty or the helplessness I felt during his hospitalizations.

Over time, I realized how vital these connections were. It wasn’t just about having someone to vent to; it was about finding people who truly understood the complexities of life with CF. The bond we share as CF spouses is unlike anything else. We celebrate victories like a successful transplant or a stable lung function test — but we also carry each other through the toughest moments, from navigating insurance nightmares to dealing with loss.

When Ty and I faced infertility, I turned again to this community. The clinical information about IVF was helpful, but what truly prepared me were the personal stories from other spouses. They offered insights and emotional guidance that no medical textbook could provide. It reinforced for me the power of shared experiences and the importance of creating spaces where CF spouses can connect.

Through the years, I’ve also leaned heavily on Ty’s care team. Early in our relationship, I made it a priority to attend his clinic visits. I wanted to be informed, to ask questions, and to feel actively involved in his care. One of his doctors once asked for my input, genuinely valuing my perspective as Ty’s partner. That moment stuck with me — it showed me how essential it is for spouses to have a voice in the care process.

Not all CF spouses or partners have the opportunity to build those relationships with care teams. Some are excluded from their partner’s CF care, whether by choice or circumstance. Others struggle to balance attending clinic visits with work or other commitments. Telehealth has offered new opportunities for involvement, but there’s still a long way to go in ensuring spouses have access to the resources and support they need.

The more I connected with other CF spouses, the more I realized how much we rely on each other. We’re a resource for advice, emotional support, and sometimes just a place to vent without judgment. These relationships taught me that while we may all feel lost at times, we’re never truly alone.

In 2016, I took those life lessons and, with the help of an Impact Grant from the Cystic Fibrosis Foundation, I founded Project CF Spouse. This nonprofit was born out of a desire to provide the resources and support I wished I had in the early days of my relationship with Ty.

But Project CF Spouse isn’t just about offering resources; it’s about building a community. It’s about creating a space where CF spouses and partners can come together, share their stories, and find strength in one another. Whether it’s through virtual meetups, connecting with local chapters, or partnering with care teams, the goal is to ensure that no CF spouse or partner ever feels isolated or unsupported.

When I think back to the early days of our relationship, I’m struck by how far we’ve come. The fears that once felt overwhelming now feel manageable, not because CF has become easier, but because I’ve learned to lean on the community around me.

That’s what I want for every CF spouse: to know that they have a community of people, a place where they can share their struggles and their triumphs, and where they can find hope.

Being a CF spouse isn’t easy, but it’s also filled with profound love and connection. The challenges are real, but so are the victories. Together, as a community, we navigate the complexities of this life, celebrating the good days and supporting each other through the hard ones.

For those just starting this journey, know that you’re not alone. There’s a whole community here, ready to welcome you, support you, and walk with you every step of the way.

Interested in sharing your story? The CF Community Blog wants to hear from you.