Guest Voice: In my life, CF is just an uninvited passenger

Since I was diagnosed with cystic fibrosis (CF) at age 2, I’ve been asked my name thousands of times — at every doctor’s appointment, hospitalization, procedure, imaging, and lab visit.

But they’re not asking to know me; they’re confirming that I match the correct birth date and medical record number, ensuring that the proper multitude of diagnoses are attached to the right warm body.

It’s hard to separate myself from CF or forget I have it because it affects everything. I wake up and take a handful of pills — CF. I eat and take my pancreatic enzymes — CF. I cough, sneeze, and glance at the curve of my fingernails — CF again. The disease is constant and inescapable.

Sometimes I wonder how much CF, a chronic illness, controls who I am? What makes a person who they are?

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People have always told me, “CF is something you have, not who you are.” I reflect on that line often. I know who I am: I love the color pink, I’m creative, I advocate for CF and transplant awareness, I’m a great friend and devoted daughter, and I have an affinity for true crime that might be excessive. I’m also strong and relentless.

But was I always this way? Is strength something I was born with, just another trait passed down like my hazel eyes or wavy hair? Or did I become strong because CF didn’t give me a choice?

Reframing my CF

So I live in a chicken-or-the-egg paradox. Am I me because of who I innately am, or because I’ve had to fight my whole life to battle my own body, combat infections, struggle for breath, and make sure my voice is heard in rooms that often overlook young people like me?

The truth is CF is not who I am, but it has shaped who I’ve become. It has molded me into someone who is resilient and refuses to give up. I’ve learned that understanding who you are outside of the disease is essential, but I’ve also realized it’s impossible to separate from it entirely.

CF isn’t just a diagnosis; it affects how I live. It’s written into my DNA and woven into the fabric of my identity. For most of my life, it felt like an enemy that I had to fend off at every turn, and in many ways it still is.

But recently, something shifted. After 23 years of resentment, anger, and salty tears, I’ve thought: What if CF isn’t my enemy? What if it’s just my uninvited passenger?

Reframing CF this way doesn’t mean minimizing the pain or the trauma. It means reclaiming some of my power.

Viewing CF as an uninvited passenger allows me to set boundaries. It reminds me that I coexist with this condition, but it doesn’t define me.

Now, when I’m in a hospital room or clinic and staff members ask for my name, I don’t think of CF first. My uninvited passenger sits quietly beside me. I say my name, Jen Dunlea, and I mean it — not as a patient, a medical record number, or a CF diagnosis.

Just as I am.

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