Talking About CF Used To Overwhelm Me. I Took 3 Small Steps To Find My Voice.

Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.

March 24, 2023 | 5 min read
Crystal Brown
Crystal Brown
Crystal standing outside the Capitol wearing a blue coat.

A few years ago, I joined other local leaders in the Finest program to raise funds and awareness for cystic fibrosis. As a culmination of the effort, the Foundation hosted a final event and brought together the community to boost the efforts. During the event, a woman came up to me, grabbed my hand, and said, “Thank you. My daughter has CF and what you are doing means everything to us.” Although I felt undeserving of her gratitude, the moment had a profound impact on me. 

I have a brother with CF and my own connection is what first inspired me to get involved with the Foundation.

In fact, when I first got involved, I almost had tunnel vision, focusing on my one singular connection. That simple gesture of a mother extending her hand opened the aperture of my perspective and helped me appreciate the full breadth of the CF community.

The Foundation calls these “mission moments,” which are powerful moments, both big and small, that illustrate the “why” behind the mission. Sharing our story and creating mission moments is one of the most powerful ways we can mobilize others to take action. It also means we have to actually talk about CF, which can be challenging for some of us. It was for me. 

I first got involved with the Foundation in 2018 when my family started researching lung transplantation for my brother, who was 27 at the time. CF had always been present, but it never felt more urgent. It compelled me to get involved, but answering the call to action would not be easy. 

For me, talking about CF has always been hard. I have always felt that CF can mobilize you, or it can consume you. Up until then, I had been consumed.

When I first got involved, I struggled to talk about it. It was deeply personal and I was so focused on the overpowering emotions I was feeling that I failed to be truly present in the moment. On top of that, I had difficulty navigating how to tell a story with so much history, not to mention the science of it all. 

Today, it has been five years since I first reached out to my local chapter to introduce myself and I am now serving on the board for the South Carolina Chapter as the advocacy chair. 

It has been an evolution for me, filled with immense personal growth — from my introductory meeting with the chapter that ended with me in tears, to attending March on the Hill and speaking with members of Congress about policies and programs supporting the CF community. 

If you are feeling compelled to get involved, here are three things that helped me:

  1. Lean into the community. To get started, I first reached out to my local CF chapter. The staff got to know me over time and brought forward opportunities for me to get involved that matched my strengths and comfort level. 
  2. Articulate your story. It can be overwhelming to find the right words when introducing yourself and talking about your relationship with CF. I found it helpful to write down my story and practice it out loud. This exercise anchored me and helped me harness my emotion.
  3. Give yourself grace. The people who show up to support the CF community are doing their best to make a difference — and that includes you, too. You may have days that are hard, where you feel self-doubt, or discomfort when trying something new. You may also have times when you need to step back and take a pause, and that is okay. 

Next for me, I remain fueled by the purpose — and inspired by the community — to continue to explore new ways to contribute.  

For you, I hope this advice resonates and that hearing my experience gives you the confidence to answer the call the action. 

What are you waiting for? Find your local chapter and get started today!   

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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Advocacy
Crystal Brown

Crystal is a sister to someone with cystic fibrosis and currently serves as a board member with the South Carolina Chapter as the advocacy chair. She has a degree in business and works as a communications advisor for global corporations. She lives in Greenville, S.C. with her husband and two children. You can connect with her on LinkedIn.

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