How I Gained the Confidence to Share My CF Story

When the pandemic started, I started to feel lost and disconnected. That changed when I was introduced to a new program from the Cystic Fibrosis Foundation that taught me how to share my CF story with confidence. 

| 6 min read
Joe Milteer
Joe Milteer
Joey smiling with his dog.

I think we can all recall the first couple months during the pandemic in 2020. We were constantly promised things would go back to normal soon. But weeks turned into months, months into seasons, and somehow we’re all here in 2022 changed in some way, shape, or form. 

As someone who has cystic fibrosis, I was in a weird state of mind in 2020. The mainstream media wasn’t talking about those with CF being at risk, but I assumed I was. To stay safe, I spent that summer learning how to garden while living with my parents, and eventually built a large garden that I still use. Gardening was fun, but as the dog days of June approached, I was starting to feel lost and disconnected. That all changed when Lauren DiMaria, one of the amazing gals who works at the Western Pennsylvania Chapter of the Cystic Fibrosis Foundation, shared an application link to the Foundation’s newest program: the Tomorrow's Leaders College Program. It involved connecting with other college students nationwide to learn more about CF but also how to become a leader on your own campus and in your community.

It didn’t take long for me to send in my application, and I soon found myself sitting in on my first Zoom call as a participant. The energy from everyone on the planning team was amazing, the speakers were captivating, and when the last session ended, all I wanted was more. The program did something for me, fulfilling a need that I had since the pandemic started. It gave me a sense of community again. Being able to hear others from around the country share their stories about having CF or their connections with the disease showed me the national reach of the Foundation. The discussion also showed me how much can be accomplished through advocacy. After this call, I did what I felt compelled to do — when the opportunity came to join the planning team for the following year, I didn’t hesitate.

In the summer of 2021, I felt blessed as things were starting to get closer to normal and the college program was getting started again. I was on an amazing planning team for that year with members from across the U.S. We all had things that made us different, from skills to creative ideas to backgrounds. Even with our differences, we came together for one thing — to raise awareness about CF.

I happened to be the only team member who had CF. At the time I didn’t think too deeply about it; however, reflecting on it now, I was able to give the inside scoop about what it’s like living with CF and navigating the world of college at the same time. I didn’t know it then, but I was sharing my CF story in a relatable way. I had always thought advocacy looked like someone holding a microphone and being the loudest one in the room with all eyes on them. Yet there I was, giving small details of what it’s like living with CF; and those small details ended up providing big insights. We used those insights to create topics that raised awareness in the most effective way possible.

That first planning year in the program was a success. It showed me the power of being open to questions and how small discussions — where the goal is to learn from one another — can lead to newfound growth for everyone involved.

By the end of that summer, I also had embarked on a new personal journey. I had moved out of my parents’ house after earning an associate’s degree at my local community college and into my own apartment in California, Pa., where I began pursuing a bachelor’s degree in business management at California University of Pennsylvania. That winter, I also started a job as a ski instructor, and I immediately found a new passion that will stick with me for the rest of my life.

With all these new changes, I was surrounded by new people. Many of them had never heard of CF. It didn’t hit me then, but every time I shared that I had CF, I was utilizing all of the tools I had obtained during the two years I was part of the college program. I no longer felt scared, anxious, or nervous about sharing my story. I felt confident and excited to open their minds and eyes to the world of CF and how they can make a difference by getting involved.

This past year has shown me what it truly means to be an advocate for CF and — more importantly — that I can share my story in a way that makes it easy for others to get involved in the CF community. I am honored to be on the planning team once again. Our goal is to empower participants to share their stories and make a noticeable difference in their own lives, college campuses, and local communities.

The deadline to apply to become a participant in this year’s college program is July 29. I am full of hope that by continuing to share what I have experienced and learned, our community will grow and one day we will find a cure.

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.

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Joe Milteer

Joe is pursuing a bachelor's degree in business management at California University of Pennsylvania. He doesn’t let his CF slow him down from chasing his passions of rock climbing, skiing, and traveling. He has been involved with the Western Pennsylvania chapter of the CF Foundation for the last decade, participating in Great Strides Walks and the 50 Finest as a host family since 2019. He is starting his second year as a member of the planning team for the Tomorrow's Leaders College Program. His dream after college is to move out west to pursue a management job where he and his team can guide people in ways to be active and reap the benefits of the great outdoors. You can follow Joe and his adventures on Instagram or on LinkedIn

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