Spit It Out program empowers CF community to share personal stories

I recently had the privilege of attending a virtual experience called Spit It Out. That’s a storytelling and public speaking training series created with a Cystic Fibrosis Foundation (CFF) Impact Grant. It’s led by Katherine Russell. And this Impact Grant truly impacted me.

Russell, who has cystic fibrosis (CF) and is a fellow double-lung transplant survivor, designed this two-session training to help people with CF learn how to tell their own stories, in whatever form that might look like for them. The program uses trauma-informed training to help people living with CF share their experiences. After going through it myself, I can tell you it delivers exactly that.

I’ll admit I went in unsure of what to expect, but it turned out to be more than just a writing workshop. I’ve spent decades either quietly managing my CF behind the scenes or, more recently, writing this very column and putting pieces of my life out into the world. I’ve always felt tension between those two instincts: the part of me that wants to protect my privacy and live my life, and the part of me that knows sharing our stories helps other people feel less alone.

Spit It Out didn’t try to resolve that tension for me. Instead, it gave me language and tools for navigating it. Participants learn how to familiarize themselves with their own story, structure it in a way that connects with others, and deliver it with power.

Russell made clear from the start that there’s no single “right way” to tell a CF story. Some of us write, some speak publicly, and some share quietly with one trusted person at a time. But all of it counts.

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Beyond the practical storytelling tools, what struck me most was who was in that virtual room with me. Other adults with CF, each carrying their own version of this disease, showed up and shared pieces of their health journeys and life stories with a level of honesty that genuinely moved me.

I say this often, but I mean it every single time: The people who live with CF are some of the most remarkable humans I’ve ever encountered. The trauma we carry, the strength we’ve had to build simply to survive, the resilience that gets woven into the fabric of our daily lives — it’s beyond words. And yet, somehow, in that room, people found the words beautifully anyway.

I am continually humbled by the openness and vulnerability I witness in this community. Every person I meet through CF spaces teaches me something new about courage. Spit It Out gave us a structured, gentle container to practice that courage together, and Russell held that space with real skill.

I want to be specific about what made this program stand out: It was a respectful, kind space. Nobody was pressured to share more than they were comfortable sharing, and nobody’s story was treated as more or less valid than another’s. Russell offered concrete tips and techniques about pacing, structure, finding your through line, and knowing your audience. It was always presented within a framework that honored how personal and sometimes painful these stories can be.

For those of us who’ve spent years wrestling with how “out loud” to be about our CF, that respect mattered enormously. It was a program that helped each of us figure out our relationship to our own story, then gave us tools to tell it well, if and when we choose to do so.

If you haven’t heard of this particular CFF Impact Grant program, I want to put it on your radar. Whether you’ve never shared your CF story publicly or you’ve been writing and speaking about it for years, there’s something here for you. Russell has taken your hard-won experience and turned it into something that helps others find their voice, and I feel and appreciate that work deeply.

I don’t yet know exactly how I’ll use what I learned in those two sessions. It may shape how I write this column going forward. It may give me courage to share my story in a new format someday. What I do know is that I left that experience feeling less alone, more equipped, and profoundly grateful for a community that keeps showing up for each other, one story at a time.

To everyone who has ever found a way to give back to this community, I offer a heartfelt thank you.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.