Columns

How to Curate Compassionate Communication

As an English major with an interest in psychology, I am constantly analyzing the effect that words can have on people. Words are magical units of meaning that we can combine in infinite ways to convey ideas and thoughts. Some combinations can be healing, while others can have the…

How Hobbies Can Help Patients with Pulmonary Fibrosis

Most of the conversations in the Pulmonary Fibrosis News Forums are about the physical and medical aspects of living with idiopathic pulmonary fibrosis (IPF). But occasionally we steer off-topic and talk about who we are as people first and patients second. We talk about our families, travel plans,…

IPF Feels Like a Roadblock to My Future

A roadblock to your future could be any number of things. Perhaps it is a new skill necessary to advance your career or the finances needed for a big purchase. Those are normal hurdles that many have to overcome to achieve their goals. A life-threatening lung disease is an abnormal…

On Some Days, I Feel Invincible

At my last doctor’s appointment, my physician asked me how I felt. I replied, “Some days, I feel invincible.” She gave me the biggest smile and told me how happy she was that I was doing so well. While I get colds and sometimes contract a virus, when I…

This Is Who I Am Beyond Pulmonary Fibrosis

An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…

It Takes a Village to Survive Pulmonary Fibrosis

You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…

Caregivers Need Care, Too

I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…