Recognizing and responding to others struggling with loneliness

What do you do with information you didn’t necessarily ask for or expect?

While attending support group meetings or scanning social media groups for those with pulmonary fibrosis, I often hear or read comments from people struggling with their emotions. They may be newly diagnosed or recently denied a transplant, or they might be a caregiver who’s overwhelmed by life with a chronic, progressive disease. Many in our community have especially struggled with isolation during the COVID-19 pandemic.

While we’re all on the same journey and may have experienced many of the same emotions, we don’t always know exactly how or when to respond to these issues.

Do you remember?

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I was stunned. Hearing terms like “chronic,” “progressive,” and “no cure” was numbing for me and my wife, Susan. But there are countless possible responses to this news.

Even Susan and I handled it differently. Susan would start crying whenever I walked into the room, while I became determined to beat IPF. As we learned more about this rare, life-threatening disease, we became more similar in how we managed it.

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But wait, there’s more

A little over three years after I was diagnosed, COVID-19 changed the world. Most PF patients began to isolate at home. Many social activities like dining out, in-person meetings, and large events were considered off limits for the general population, much less the PF community.

Following my bilateral lung transplant in July 2021, I faced even more restrictions because of the immunosuppressive medicines I was taking. My travel was also limited because I’d assured my care team I’d remain close to the transplant facility for the first year.

Struggling with isolation and loneliness is a real issue for many of us with a rare disease. As I was preparing this column, in fact, U.S. Surgeon General Vivek Murthy issued an advisory called “Our Epidemic of Loneliness and Isolation.” An advisory like this one, as the report notes, is “reserved for significant public health challenges that require the nation’s immediate awareness and action.” Murthy recognized that even before the pandemic, 50% of adults reported experiencing loneliness.

Many in the PF community, much like any other rare disease group, find themselves struggling with loneliness, along with other issues like depression and anxiety. In my view, these are normal responses to a PF diagnosis and its resulting uncertainty.

Resources

Last year, I wrote that I’d taken a course called Mental Health First Aid, which is designed to teach people how to provide “first aid” to anyone facing a mental health challenge or crisis. I learned how to recognize and talk with someone who’s in distress or simply needs someone to listen.

Do you know what mental health resources are available in your community? It’s different everywhere. If you’re a patient at a medical facility that’s part of the Pulmonary Fibrosis Foundation Care Center Network, a social worker will be part of your care team.

If you’re concerned that someone may harm themselves, calling 988 here in the U.S. connects you with the Suicide and Crisis Lifeline, which provides 24/7 access to free resources. Doing an internet search for “mental health resources near me” can also help you identify local resources.

Responding

In sharing these scenarios, I’m not asking you to take on roles you’re not trained for, such as a social worker or a therapist. I simply want you to have a better understanding of the resources available, especially in light of Mental Health Awareness Month.

I recommend you take time to review the surgeon general’s advisory. The report includes six pillars to advance social connection, and I believe the sixth, “Cultivate a Culture of Connection,” includes attributes relevant to many rare disease communities.

Empathy is a quality I often see in those with rare diseases. We understand the journey and can hold each other up by offering support or simply an ear. Building a stronger community is another way we can 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.