Facing the Unique Challenges of a Late CF Diagnosis

When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.

| 4 min read
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Jordan Miller
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I remember it like it was yesterday: sitting in a doctor's office, 13 years old, listening to the doctor tell my brother what cystic fibrosis was and the challenges that awaited him. He was 16 and newly diagnosed. My parents wanted our whole family there to support him, so I went -- a young girl, struggling to grasp what CF was and what in the world it meant for my brother.

And then it happened.

Despite the fact that we were still waiting for my own test results to come back, the doctor looked across the table and very nonchalantly said, “Yeah, she's got it too.”

I sat with a blank stare, unable to fully grasp what this meant or the fact that my entire world was about to change. My mother excused herself from the room, no doubt to let a few tears out in private. My father began to ask the doctor how he could possibly know just by looking at me. But sure enough, a month later my results came in and the doctor was right.

In the matter of a few short months, my family was redefined from having two seemingly normal kids to two CF patients -- and boy, did it change everything.

At the time of my diagnosis, I had just started to experience health problems. I was sick all the time, always on antibiotics and constantly being shuffled from one doctor to another. But once I knew that I had CF, my days began to revolve around my disease, and to say it was an adjustment is a gross understatement. My parents were ALWAYS concerned about where I was, who I was with and how I was feeling.

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Due to my late diagnosis, the burden was not on my parents to ensure I grew up with good habits, but on me to form them. My parents did everything they could to help me, but it largely fell on me to make sure that I was taking care of myself. It was a daily struggle for me to slow down and do the therapies, and I quickly learned the price I would pay if I wasn't diligent.

In addition to my new treatment burden, I also began to realize how difficult it was to cope with a disease that no one understood. My friends never truly realized that I was different and couldn't understand why things had changed. But the fact remained that the older I got, the more I became different from them. I began to have to sacrifice things for my health that other kids my age didn't, such as quitting sports or being homeschooled because I was in and out of the hospital.

Looking back, the hardest part was wanting to erase my entire experience with CF and go back to the way it was. I so desperately wanted to go back to being “normal.” I knew what it was like to not live with this disease -- to be healthy and worry-free -- and understood what it felt like to not live with the impending fear of my next hospital visit or which intravenous (IV) antibiotics I would be put on.

Despite these challenges, I know that everything I've gone through over the past 14 years since my diagnosis has made me stronger than I ever thought I could be. I no longer daydream about what my life would have been like had I not had CF. It's taken me a while to get here, but now when I picture my life without this disease, I picture my future.

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Topics
Diagnosis | Emotional Wellness
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Jordan was born with cystic fibrosis, but was diagnosed at the age of 13 when her health problems began to surface. Despite this, she attended the University of Arkansas where she graduated with a B.A in advertising and public relations. She has since lived in Dallas, Nashville, Tenn., and Little Rock, Ark.

Jordan currently lives in Fayetteville, Ark., where she manages Walmart's digital media trade desk. She is an advocate for the people living with this disease and actively involved in the Arkansas Chapter.

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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.