The Power of Shared Stories

So much of my life was spent dealing with CF in silence. It wasn’t until I heard the stories of other people with CF that I realized the weight of what I’d been carrying. 

Oct. 17, 2024 | 5 min read
A professional headshot of Maré Smit
Maré Smit
Maré sitting in a hospital bed with her daughter

I was born in 1983, beginning my lifelong journey with cystic fibrosis. My early days were fraught with challenges. I had a swollen abdomen at birth, struggled with failure to thrive, and suffered from reflux. At 3 months old, I was still at my birth weight. 

It was during a visit to the doctor that my aunt, after giving me a kiss, remarked that I tasted salty. A nearby physician overheard her and suggested I be tested for CF. The diagnosis came swiftly, and I began a regimen of enzyme treatments that helped me gain weight and navigate the early years of my life.

As I grew older, I completed school and university, but I carried a heavy burden: the stigma of my diagnosis. Sharing my reality with others felt like opening a door to pity — a reaction I found suffocating. Each time I revealed my condition, I was met with sympathetic glances and words of encouragement that felt more like chains than support. I began to see pity as a motivation killer, a crippling force that stifled my spirit. So, I chose silence. 

I went through life praying for a miracle, trying to make the most of every moment — both in and out of the hospital. I learned to appreciate the preciousness of time, focusing on what truly mattered to me. Yet, the weight of my unshared experiences lingered, creating a chasm between my inner world and the outside.

In 2022, my health took a sharp decline. I struggled to breathe, sleep, talk, and even laugh. Daily activities became monumental challenges. It was during this tumultuous time that I consulted my CF specialist, who suggested I start on elexacaftor/tezacaftor/ivacaftor (ETI) — a medication that could potentially change my life. However, the cost was prohibitive, and I found myself turning to crowdfunding to afford it. This process opened a new chapter in my CF journey.

As I sought support, I began listening to the stories of others who had undergone similar experiences with CF, particularly those who had started ETI. For the first time, I heard people articulate the trauma and symptoms that mirrored my own. Their words resonated deeply with me, illuminating the shadows of my own experiences. I realized that I had been carrying my trauma in silence, and hearing others share their struggles was both cathartic and eye-opening.

It was a revelation to understand that I was not alone in my fight; many others had walked similar paths — each breath a battle, each hospital visit a reminder of the fragility of life.
 

The realization that I had been living with unacknowledged trauma was profound. I began to see my CF journey not just as a burden but as a shared human experience. I understood that having CF was both a blessing and a curse. Every breath was a fight for life, and every procedure, anesthetic, needle prick, or hospital visit was a testament to my resilience. This newfound perspective empowered me to confront my own struggles and embrace the stories of others.

With the support of my loved ones, I was able to afford ETI. Within three hours of taking the medication, I felt a remarkable change. My sinuses began to drain spontaneously. After just one week since starting this miracle medication, I stopped coughing entirely and had no hemoptysis. It was as if a weight had been lifted, and for the first time in years, I could breathe freely.

This transformation ignited a fire within me. I realized that I had to do something to ensure that others with CF wouldn’t struggle as I had for 39 years. Thus, I founded a nonprofit organization called Breathtaking Fundraising NPC. The name reflects the duality of CF — it is a breathtaking disease, yet life can also be breathtakingly beautiful amidst struggles and hardships. My mission is to encourage others to share their stories of hope, courage, and survival, by creating a platform where we can uplift one another.

Through this nonprofit, I continue to learn about my own struggles and the challenges that remain. I am committed to advocating for access to effective medication for everyone with CF, ensuring that no one has to endure the same hardships I faced. My journey has taught me that sharing our stories can be a powerful tool for healing, not just for ourselves but for others as well. Today, I stand not only as a survivor but as a beacon of hope, ready to inspire others to embrace their journeys and find beauty in the fight for life.

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

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Emotional Wellness
A professional headshot of Maré Smit

Maré was diagnosed with CF at 3 months old. Her passion is to support families who are affected by CF and raise awareness about CF. She is an occupational therapist and project manager whose main focus is to ensure children are ready for school. She lives with her husband and two children in South Africa, where she started a non-profit organization called Breathtaking Fundraising NPC. You can follow her work on her website or contact her via email.

Recent Community Posts
Optimism in the Face of Transplants
Blog | 6 min read
Focusing on the Future Without My G-Tube
Blog | 3 min read
How College Helped Me Open Up About My CF
Blog | 5 min read