Dear Survivors, We Can Do Better When It Comes to Sharing Our Stories

When someone receives a life-changing diagnosis, it can feel like their world is caving in. A diagnosis changes a person’s landscape, alters their expectations, and obstructs their former worldview.

Some people understand what this is like, while others, no matter how hard they try, just don’t get it. Chances are, when it comes to personal networks, those who don’t understand probably outnumber the ones who do. It can be isolating to grapple with a diagnosis that even loved ones fail to truly comprehend.   

Those closest to the person who is diagnosed can be of great comfort. They might try to learn more about the condition and listen to the various experiences in an effort to empathize. But there is a difference between a dependable friend and someone who understands what it feels like to walk in another person’s shoes.   

Luckily, support groups help to foster the connections that make life with a rare disease less lonely. Before the pandemic, my family and I attended many in-person support groups at the University of California, San Francisco, where my mom, Holly, received her bilateral lung transplant. I felt instant connections with other caregivers and enjoyed learning about the transplant journey alongside others.  

These days, those meetings, and others like them, still take place on video chat platforms.   

Another good place to find community support is in forums. Since adding the role of forums moderator to my résumé, I have witnessed how much information and support are shared in our Pulmonary Fibrosis News Forums. With over 2,000 members, there are plenty of experienced people to answer the endlessly variable questions that this disease prompts.   

If knowledge is power, support groups and forums communities are like the Hoover Dam. And like hydroelectric power plants, support groups are highly productive, but imperfect, entities. They tend to lack one very important element: success stories.

A handful of post-transplant patients have come to our support groups, but they are far outnumbered by wide-eyed caregivers and cannula-clad crusaders. I’ve noticed this in my own health struggles as well. For traumatic injuries, surgeries, and maladies, I have sought refuge in online support groups. In those groups, I found people just like me — in the thick of their trauma, in the depths of their despair, searching for answers and hope.  

When six different doctors told me I would never run again after a horrendous foot injury, I wanted to see videos of people with similar injuries running, playing sports, and beating the odds. Commiserating with others in the foot fracture forum eased some of my anguish, as I realized that at least I wasn’t alone.

But I wanted out of that club. A full recovery felt almost impossible when I wasn’t seeing anyone who had done it.   

I appreciated the community, much like my family appreciated the community of our transplant support group while my mom was in the ICU. But in both cases, I wanted to fertilize the seeds of hope with other people’s success stories. I yearned to see people who had been in my mom’s yellow hospital socks now climbing mountains.  

The mountain climbers are out there, I promise. As are the family grill masters, the “World’s Best Nanas,” the passionate painters, and the world travelers. So many people are thriving with transplanted organs. I know them now, so I assure you they exist, even if they aren’t in the forums.   

The reality is that those who survive something as traumatic as an IPF diagnosis or a lung transplant get through the initial euphoria of surviving, and then they move on. They don’t want to linger in the support groups that remind them of their most painful days. Who could blame them? They have lives to live!

For me, it is an emotional burden to relive my mom’s sickest days while writing this column twice a month. Sometimes I’d rather lay down my pen and move on. But I know that there are people out there who need to see survivors and thrivers to cultivate hope for their own journeys. So, here I am, telling my mom’s story. Our story.  

And now that I am running again almost three years after my foot injury, I still check in with the Lisfranc fracture club (and the hip surgery club) every once in a while. I want to show people that at least one person has beaten the odds.   

If you are out there thriving after receiving a lung transplant, I implore you to stick around. Share your story for those who are still in the trenches. You don’t have to climb mountains, but showing up and saying “I got through this” could be all that someone needs to read to keep climbing the mountain of their IPF journey.

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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.