I’ve found benefits and drawbacks to joining the IPF fraternity

Fraternal organizations have long been a part of colleges and universities. It’s not uncommon to find an area around campus labeled as Greek Row. These organizations allow like-minded individuals to join together, taking hold even beyond college campuses.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2017, I had no idea I was joining a fraternity — one that no one wants to be a part of. In college, I didn’t join the traditional Greek fraternities, though I was a member of Alpha Sigma Lambda, an honor society for adult students. Professionally, I’m a life member of the Fraternal Order of Police. Those were opportunities I voluntarily leveraged because they benefited me.

I didn’t have a choice about joining the IPF fraternity. None of us did, but here we are. If we were in a Greek fraternity, our letters would be iota pi phi.

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The benefits

You might be surprised to learn that I believe this fraternity has benefits. Longtime readers of my column will know I have a passion for advocacy. This fraternity is where I turn when I need to gather voices from the patient or caregiver communities.

Those of us with IPF develop an immediate bond and often share our hacks and shortcuts with each other. I cannot tell you how many methods I’ve learned for keeping the tubing that runs from the oxygen concentrator to the cannula from kinking.

Our members don’t all participate at the same level or exhibit the same demeanor. Some prefer to sit quietly and listen while others ask many questions and want to be more involved. Some are angry and uncertain about why they developed pulmonary fibrosis (PF), especially those with the idiopathic type. Members with familial PF may be sad, having seen a family member experience this disease.

Those who know me would probably describe me as positive and outgoing. Shortly after my diagnosis, I wrote in block letters, “Be positive in all things.” That mindset has served me well, causing some to ask how I can be happy with a condition like IPF.

When I received a bilateral lung transplant in 2021, I became a member of a more exclusive chapter of the IPF fraternity. I view this step as a continuation of my journey. I continue to be involved with the PF community, though I’ve noticed that some seem to leave the fraternity after a successful lung transplant. I understand that it may be a chapter in their life they wish to leave behind.

The drawbacks

There’s also a downside to joining such an exclusive fraternity, even as its members become our circle of friends. Many of my former colleagues went silent once I left the workforce. As my IPF progressed, staying in touch became more difficult for them. I do think people have difficulty relating to someone with a chronic, progressive, incurable disease.

However, I’ve maintained some friendships that began well before my diagnosis, and I’ve formed new ones along the way. My friends outside of the IPF fraternity bring a necessary balance to my life.

I’m a proud member of iota pi phi. I feel I’ve helped others in this fraternity, and I know that many have helped me, allowing me to make every breath count.

Do you see other benefits or drawbacks to belonging to the IPF fraternity? Tell me about them in the comments.

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.