How I shared my IPF diagnosis with friends, family, and co-workers

“You have a condition called idiopathic pulmonary fibrosis, or IPF. There is no treatment or cure. You likely have three to five years to live. You should get your affairs in order.” What do you do with this information? How do you share it with others?

This is essentially what I was told when I was diagnosed with IPF in January 2017, and it’s similar to what many other pulmonary fibrosis patients hear. The prognosis is grim. I have shared before that I was not familiar with IPF when I was diagnosed, and I knew sharing this health update would be a challenge.

My wife, Susan, and I sat at home that evening replaying the day and discussing how to share the devastating news. At that point, we didn’t know if a transplant was even a possibility.

I replayed those words in my head; the phrase “you should get your affairs in order” seemed so final. I was only 59 years old. I had worked as a senior vice president for two decades after retiring from law enforcement, and had spoken to a variety of audiences about an even wider variety of topics. I knew the message I wanted to deliver; to communicate it effectively, I had to know my audience. Empathy, on my part, was essential to effective communication.

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Aug. 1, 2017 Columns by Kim Fredrickson

The Challenges in Sharing My Diagnosis

Consider your audience

My initial approach was too straightforward. Describing IPF as a terminal, progressive disease with no cure was accurate, but a little too honest. Equally accurate and not too harsh was saying I had been diagnosed with a chronic, progressive disease that currently has no cure.

I knew my audience. I began listing them and establishing the messaging priority. At the top of my list were my children. They were adults living their lives almost 500 miles away. They lived near my ex-wife, so I elected to reach out to her. I told her about my diagnosis and asked her to be with them when I told them. When I told my children, “shocked” is probably the best way to describe their reactions. They came back to me later with questions.

Next, Susan and I told our parents. Their immediate response was to ask what they could do to help us navigate this.

Our siblings came next. My brothers were rather stoic, which I could have predicted. Susan’s sister immediately rallied around us.

Before we went further, Susan and I shared my diagnosis with our respective employers. We knew their support would be key as we anticipated time away from the office for appointments and testing. It was also important to me to tell my team in person. I didn’t want them to read about my illness in an email or company announcement.

I elected to share the news of my diagnosis with the rest of our family and friends via Facebook. That was a hard note to write. I couldn’t adjust based on audience cues; I had to craft a message for a broad group. The response was incredibly supportive.

Not everyone will take news of a terminal diagnosis well. Perhaps they’ve lost someone to an incurable disease. My mantra, “Be positive in all things,” helped me support others through my diagnosis. I was determined to follow my own advice.

Everyone we shared my diagnosis with was invited to join a Facebook group Susan created, called “Sam’s got this.” It lets us share updates efficiently. This became more important leading up to my bilateral lung transplant in July 2021. Susan’s role as a caregiver required much more work, and I was focused on recovering from surgery.

I wish I could recommend a book that guides those facing a chronic, progressive diagnosis, but I cannot find one I like. I can only share my own experiences.

Tomorrow, someone else will be diagnosed with IPF and hear the same words that I and so many others have heard. Hopefully, they will find this column as they consider how to tell their family and friends. I will know I’ve helped them make every breath count.

Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.