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We must all learn to tell our story

By Tré LaRosa


It’s interesting that parts of our identity are there from the day we are born but we can almost never recall a specific moment when we learned about them. That’s how I feel about my cystic fibrosis; For several years, I existed in the world as a child, blissfully unaware of what CF was, only for it to become a part of my identity in my formative years. Maybe I was too young that the memory has faded or maybe it just never fully consolidated in my brain, but I can’t remember a single conversation where my parents first explained to me what CF was. It was just…the way it was.




There is no obligation for people with CF to disclose their diagnosis to their school or to the world. Some families choose to be forthcoming about it, others choose to keep it private. Our family has always operated with the belief that it was just a part of our lives; it wasn’t necessary to keep it private and being open about it gave us a feeling of control. In elementary school, I had to go to the nurse’s office to get my enzymes since the school wouldn’t allow me to take them myself. I still remember what I would tell my peers—usually they were a friend—when they’d walk with me:

”I have an illness where my body doesn’t digest food so I have to take these things called ‘z’s.’ It also makes me cough a lot so sometimes people think I’m sick. But don’t worry, it’s not contagious.

Explaining CF to other kids is one of my earliest memories. My parents are great in a lot of ways, but their natural ability to make CF “normal” was an essential skill when raising me and my sister. It was in this normalization—and their inviting me to take control of my CF at a young age—that I continually reflect on as the seed that blossomed into my career and identity as an adult decades later.


I was an astute kid, so when I noticed that I got special attention, I deduced early on that it was due to my CF. When you’re constantly doing treatments and taking medications, coughing, getting sinus surgeries, and explaining to other kids why you have to do all these additional things that they don’t have to do or understand, it’s hard not to feel unique. To my young mind, the only other person in my entire universe that could understand my situation was my sister.


Since the school knew I had CF, I was allowed to miss school more often, I was able to have extended deadlines, I was able to bring water during state exams when other kids weren’t, and I was allowed more compassionate trust with bathroom breaks, water breaks, and more.


Looking back on this, those exemptions were obviously necessary for me; They made my school experience more sustainable and accessible. But when you receive special attention all the time, it can be hard to feel normal. It makes you realize your life is different than everybody else’s in most ways. It teaches you that your story is important and different and valuable. Not every kid is fortunate enough — even though the circumstances surrounding the experiences aren’t great — to learn that their story is important.


As I’ve gotten older, though, I’ve learned that everybody has a compelling story. Our experiences form us and transform us and meld us and redirect us and teach us. Life is not necessarily about the hardships we deal with directly, but the indirect way in which those same hardships teach us lessons that we need to learn. Every person I’ve ever met has had an interesting story where—and here’s the key—if told correctly, would draw anybody in.


Everybody should tell their story. We can learn by writing and reflecting and reading. We can learn by talking to others — be it strangers or friends that we haven’t sat down and talked to lately. Whenever I write, my primary goal is to get the scattered thoughts out of my head and onto paper. Once the words are down, I view them as putty. Much like Michelangelo (I wish, at least) with his slab of marble, I cut, edit, rephrase, and rewrite my words. Writing not only requires us to explore our experiences and learn how they’ve impacted us, writing forces us to knit the story around them in a compelling way.


Our stories comprise the experiences we have, the hardships we endure, the victories we celebrate, the people we share the world with, and the reflections on all the above. As we move toward the future, we often spend too much time looking backward. There is benefit to reflection and introspection—I’d be the last person to advocate against self-reflection—but it’s necessary we move forward with life.


We move forward with life by recognizing our stories and their inherent worth. When we learn to tell our stories, we open our minds and welcome others’ stories. Beautiful joy and wonder is found in the world of our relationships—our relationships with our own stories, with nature and the world around us, and the people in our lives.


My sister died last year. In the days after, I was lost but all I wanted to do was to tell her story and write through all of my conflicting feelings. My grief, my guilt, my frustrations. Also, my relief, my newfound calmness in her absence. Her death is a part of my story. In learning to tell my sister’s story, I’ve found my own voice.


Storytelling is what makes humans human. Go out and tell your story today.




About the Author Tré LaRosa is a 25-year-old adult with cystic fibrosis living in the Cincinnati, OH suburbs. He's an alumnus of the University of Kentucky where he studied biochemistry and minored in mathematics and biology. After graduating, he was fortunate enough to find a lab at Cincinnati Children’s Hospital that was doing compelling research on personalized medicine, mostly focusing on modulators and patients with rare diseases. Working in the lab has been both poetic and profound: He was treated at Cincinnati Children’s for 12 years so working behind the scenes has been especially rewarding. It’s also been a great privilege to see the science happening in the CF world while working alongside brilliant scientists and doctors. In addition to the science, he has been focused on the importance of advocacy, telling our stories, and empowering people with CF to be more involved in their care with their care team.

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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

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© United States Adult Cystic Fibrosis Association 2019

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