Welcome to the Life With PF series, where we share real stories from patients. Today’s story is from Cheri Riley, PFF Ambassador.

Being diagnosed with a serious illness is life-altering, and sharing that diagnosis with family and friends can feel overwhelming. My story is different from many others. I wasn’t experiencing any symptoms—I went in for a routine physical with a new doctor, only to have my life take an unexpected turn.

During my exam, everything seemed fine until the doctor listened to my lungs. He kept returning to my lower left lung, his demeanor shifting from upbeat to concerned. He asked if any doctor had ever mentioned a sound in my lung. That moment led to a series of tests—an X-ray, a six-minute walk test, and a spirometry reading—before I was sent to a specialist who diagnosed me with idiopathic pulmonary fibrosis (IPF).

I left the office and immediately called my husband from the car, still trying to process what had just happened. I had no symptoms, so how could something be wrong? I spiraled into a roller coaster of emotions—fear, anxiety, confusion. Panic attacks became a part of my daily life. I felt incredibly alone.

Finding Support

I remembered a woman I met years ago while earning my education degree. She lost her husband to pulmonary fibrosis (PF), and I found her number and called her. She was an amazing resource, reminding me that I wasn’t alone. She even helped me get an appointment with a specialist at the University of Rochester, a PFF Care Center Network site.

When I asked my pulmonologist how long I had to live, she responded, “Everyone is an individual, and we’re going to monitor you closely.” That was the moment I decided to focus on what I could control.

Telling My Loved Ones

At first, I kept my diagnosis quiet. Because I didn’t have symptoms, it didn’t feel real. But that changed when I needed to go on oxygen—there was no way to hide it anymore. I decided to be honest and direct. I told my friends, “I have idiopathic pulmonary fibrosis. I don’t know how I got it.” Their reactions were a mix of shock and support. My neighbors saw me with oxygen and asked, “What’s going on?” That’s when I made a conscious decision to educate people about this disease.

As a former school teacher educator, I was used to presenting information, so I immersed myself in learning everything I could about the disease through the PFF’s website. I became a PFF Ambassador, participated in clinical trials, and used my experience to help others navigate their own journeys. Finding a purpose in advocacy made me feel more driven.

Now, when someone newly diagnosed joins our support group, I listen. Because in those early days, I needed someone to do the same for me. Fear and uncertainty can be paralyzing, and I make sure to remind them: “You are not alone.”

Living with Gratitude and Hope

I’m in my seventh year of living with PF, and I choose to focus on gratitude and optimism. I look at how I want to live—with hope. There are many things I can no longer do, but I find joy in what I can.

When I was diagnosed, my grandchildren were little. I told my kids that I couldn’t play with them like I used to but I wanted to still spend time together. I became a professional artist during retirement so now, we make art. I’ve even started sewing with one of them. My family understands my condition and we recognize how precious our time together is.

Frequent communication is important but so is simply living your life. My family worries but I remind them that I don’t want to be isolated. No one knows exactly what to do, but they want to help—so I let them.

Sharing a diagnosis isn’t easy, but being honest, accepting support, and finding purpose in your journey can make all the difference. You are not alone, and the PFF offers many helpful resources. I recommend their Friends and Family card that you can share with loved ones to help them understand what a diagnosis of PF means. The PF Information Guide and Caregiving Guide are also excellent, and PF Basics: Info for Newly Diagnosed Patients is the gold standard for anyone who has been recently diagnosed.

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About the Pulmonary Fibrosis Foundation
At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.
As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.