Navigating young adulthood is already a complex journey. Not to mention adding another layer such as growing up with cystic fibrosis, which can make the path feel even more isolating. Growing up with CF, I felt the impact of my condition most during my school years, especially when I was hospitalized. I was always active and loved being involved in extracurricular activities and volunteering, so being pulled away from that life was hard. It meant missing moments, connections, and a sense of normalcy and control.  

During those times, my support system became everything. My family, friends, and church community lifted me up when I needed it most. When I didn’t feel strong, I leaned on their strength. That taught me early on that support isn’t just about having people around, but it’s about having people who truly show up. 

My support system also includes my healthcare team, who walk alongside me in managing CF. I trust them to help me understand what’s going on with my health, make decisions, and adjust when things change. I’ve learned to be open and honest with them, even when it’s hard to explain how I feel. In return, they listen and support me, which helps me feel more in control and less overwhelmed. 

As I’ve gotten older, I’ve learned that building a support system requires vulnerability and boundaries. I’ve struggled (and still do sometimes) to explain my CF to others. It’s not something I always share, and I’ve come to realize that’s okay. I need to feel that someone can offer a safe space before opening up. Not everyone will understand, and not everyone needs access to that part of me. One of the most important boundaries I’ve set is ALWAYS putting my health first. That includes my physical, mental, and emotional well-being. I’ve learned to distance myself from people who don’t respect that. Protecting my peace is part of protecting my health. 

Finding community with others who have CF has also been life changing. I have made the effort to participate in support groups, volunteering, advocacy work, and sharing my story; seeking these connections with others who truly understand what this journey feels like. That sense of connection brought me hope and comfort on many occasions. It reminds me that I’m not alone and that I can help others feel less alone too. 

I’ve also taken steps to support myself by seeking therapy. Having a space to process, grow, and cope has been pivotal in my journey. I have learned that strength doesn’t mean doing everything alone.  

Building a support system with CF takes time, intention, and trust. However, with the right support system, I’ve learned that I can face CF and still live a full, meaningful life on my own terms. 

By: Jaelyn Cooper