In the PF community, our shared experiences go beyond our health

Looking at the person sitting nearby, I’ll often say, “So what are you in for?” While to me the question is slightly reminiscent of a conversation between two inmates, that’s not the case in this example. This conversation starter also works at a transplant clinic.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017. At the time, I didn’t know anyone else who had the disease. But that’s changed over the past seven years. Today, a significant number of people in my life have also been diagnosed with IPF or other interstitial lung diseases.

Following my bilateral lung transplant in July 2021, a new group of acquaintances from the transplant community joined my circle of friends. Initially, our connection was centered on what we talked about, which was mostly health-related. But there was so much more waiting to be unearthed.

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People I met in waiting rooms or support groups were a large part of my contact with the outside world. That was reinforced when I went on disability and left the workforce in the fall of 2017. I found myself with a new circle of friends.

Support group introductions typically began with a name, the reason for being there, and the date the person was diagnosed. As I got to know people on a more personal level, I found that there was much more to learn about these new relationships. I didn’t know the rest of everyone’s story. As I got to know them better, I found that I was among a cross section of society.

When I heard what the others had done for a living, I realized I was among a deep talent pool. One woman had operated a motor coach business with her husband. Another came from a family that ran a candy store. There were also a nurse practitioner, someone who worked in construction, a dentist, and a former FBI employee.

As we continued to get to know one another, I discovered that we had more things in common. For example, I’m a lifelong Buffalo Bills fan. One day I met a larger-than-life Bills fan who also has IPF. Others love to spend time at the beach, as I do, and some even live at the beach. Still others love to travel, tend to their gardens, or do jigsaw puzzles.

It turns out that we had more in common than just our disease. We started talking about these common interests and evolved from being acquaintances to becoming friends. Several years ago, I wrote about how my group of friends had changed after my IPF diagnosis. Several circles of my friends began to overlap, which is still true today.

We realized all of this after we started talking about things that didn’t have to do with our illnesses. If you’re a fellow patient, think about the people you’ve met along the journey who share your diagnosis. Do your conversations focus on your disease, or have they become more personal?

In my experience, as conversations moved away from life with pulmonary fibrosis, things became a little more “normal.” Among the craziness of my health journey, a little normalcy was yet another thing that helped 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.