The importance of support groups in navigating life with PF

Living with pulmonary fibrosis (PF) is not for the faint of heart. That applies equally to patients, caregivers, and loved ones. While each of us is on a unique journey, there are times when support is necessary.

I have shared before that when I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I wasn’t familiar with the disease. My wife, Susan, and I embarked on this journey with little knowledge, a desire to learn about IPF, and the will to win.

One of the tools available to us were support groups. My initial experience wasn’t positive. I could never decide if it was the tone of the group that put me off, or if I just wasn’t ready. But my resistance didn’t last long.

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In 2017, I joined a support group at Inova Fairfax Medical Campus in Virginia, whose Advanced Lung Disease and Transplant social work team was holding in-person meetings. These were primarily educational, featuring guest speakers of various disciplines from the transplant program. There were also meetings where attendees could ask each other questions. That was where I built some of my earliest relationships with people on a similar health journey.

Unfortunately, the in-person support groups ended when COVID-19 took over. As people and organizations found ways to pivot, meetings were conducted virtually, with many leaders taking a crash course on how to use Zoom. The Inova support group also switched to virtual meetings, as the risk of gathering in person was too great for PF patients.

Still, many members of the PF community felt isolated during the pandemic. The lack of social contact took a toll.

This led me to create Coffee Among Friends, a virtual support group with a coffeehouse vibe. Most attendees have PF, but those with other interstitial lung diseases are welcome. People can join the virtual room to meet others, ask questions, share hints, or simply listen. What started as an experiment to relieve isolation continues to meet monthly. The group did miss one meeting in July 2021 when I had a bilateral lung transplant.

The Pulmonary Fibrosis Foundation (PFF) also offers four monthly virtual support groups:

• PFF Voices, which is focused on education.
• PFF Caring Conversations, a group for caregivers.
• PFF Lung Transplant Community Support Group, which is geared toward those who’ve had a transplant or are interested in learning more about the process. I co-lead this group each month.
• PFF Coloquio, a group for Spanish speakers.

More information about these support groups, including the Zoom link, can be found on the PFF website. The site also offers a tool that allows you to search for local support groups across the U.S.

When my team at Inova asked me to speak one-on-one with newly diagnosed patients or those considering a transplant, Susan would often speak with the patient’s caregiver. As a result, she started a virtual support group on WhatsApp with the caregivers she has spoken with over the years. They can group message or join a group call.

Today, some groups have returned to meeting in person while others choose a virtual or hybrid approach. Regardless of how they meet, support groups can help those living with PF recognize that they’re not alone on their journey. I do recommend trying out several different groups to find one that’s a good fit. They’re not all the same.

For me, participating in or leading a support group helps me 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.