How I Learned to Be More Open About My CF

As a young girl who spent most of her time in the theater, I didn't want anyone to know that I had CF or treat me any differently because of it. When I met the love of my life in college, however, my approach to opening up about my disease began to change.

| 5 min read
Jennifer N. Jones

Have you ever heard of the phrase, “the show must go on?” It's a common expression in the theater world. When I was a young girl in theater class, I learned that if you stumble over your lines or miss a step in a dance number, just smile and keep going.

When I was younger, I didn't tell anyone that I had cystic fibrosis. Only a handful of my closest friends really knew. When I coughed, I blamed it on asthma or allergies. Since they were more common, they were easier for other people to understand and didn't require me to explain the rare and complex disease that is cystic fibrosis. No one I knew had CF and I didn't want anyone to treat me any differently because of it. I wanted to keep up the image for as long as I could that I was just your average girl who loved to sing, act, and dance in every play possible.

I couldn't always run as fast as others and my voice would sometimes get a little raspy when I sang, but I wanted to keep CF behind the scenes. I learned as a young actor that if I forgot my lines on stage or an obstacle presented itself, “the show must go on.” So, I took that phrase and put it into action. I didn't want to give cystic fibrosis the spotlight or to ever let it steal a standing ovation.

As the disease progressed, however, it became harder to hide. I was eventually accepted as a theater major at the University of Central Florida, where I met the love of my life. Little did I know, this would be a major turning point in how I opened up about CF.

I believe that first impressions are everything, so I'm sure you can imagine that I didn't want to lead with, “Hi, my name is Jennifer, and I have a genetic disease.” Then, one afternoon, after weeks had gone by without telling him, my roommate let him into our dorm room while I was using my nebulizer machine. It was then that I told him about my cystic fibrosis for the first time.

I explained that CF requires me to do breathing treatments to help me breathe -- not wanting to overload him with information right off the bat. I can vividly remember being quite nervous about how he might react, and I even wondered if the disease would scare him off. Fortunately, he smiled and said, “You're like a sexy Darth Vader.” We both laughed, and I felt so relieved in that moment … overjoyed, really. Like I could tell him anything and he would accept and love all the layers of what made me, me.

There was even a special bond that came from it, because he surprised me by already knowing exactly what a nebulizer was. He told me that he had asthma when he was young and had used one himself. Fourteen years later, we are still together, and I'm more in love with him now than I even was then.

Me and the love of my life during our freshman year of college.

Slowly, I began to open up to more and more people. As I did, I found a connection with the ones that I told -- people living with and without cystic fibrosis, who were often facing their own obstacles or going through similar challenges in their lives.

In truth, many of us have something that we would rather keep to ourselves. We all have our own obstacles in life or something that scares us, but we continue to power through.

There is always a feeling of vulnerability when I speak publicly about my CF and how it affects me, and I tend to shed a few tears during the process. It's almost like a release for me, a cleansing of sorts. In that moment, I'm owning my truth, shining the spotlight on my disease, and unmasking my imperfections all at once. Each time I talk about cystic fibrosis, I'm humbled to be a voice for the 70,000 people living with this rare disease.

Opening up about cystic fibrosis can be hard but bringing it center stage can also be empowering. In a bit of irony, the most effective method by which we can move closer to forever silencing this awful disease is to raise our voices and raise awareness. I'm looking forward to the day when the disease is finally cured, and I can applaud everyone that made that magic happen.

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Jennifer is a makeup artist and a registered yoga teacher who was diagnosed with CF at birth. She is a proud University of Central Florida alumna and resides in Orlando, Fla., with the love of her life and their four-legged son, who happens to be a border collie. In her spare time, she advocates for the CF community as a public speaker for the Cystic Fibrosis Foundation and is a volunteer. You can find her team, “Jen's Boogie Busters” -- a support squad of friends and family -- each year at Great Strides. She also enjoys cooking, singing, traveling, and the beach. You can connect with Jennifer on Facebook or Instagram

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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.