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I Often Find Myself Downplaying My Invisible Illness

One of the unique challenges of living with an invisible illness is figuring out how to tell others. Although I’ve lived with idiopathic pulmonary fibrosis (IPF) for five years, it’s still not easy for me to disclose my condition. Most people wouldn’t know that this life-threatening and relentless disease has…

Turning Pandemic Negatives Into Positives

I’ve found myself daydreaming lately about a return to normal. I long for the days when we didn’t need face masks, when I could see someone’s smile during a conversation, and when hand sanitizer wasn’t the most frequent smell I encountered. Most people who know me would describe me as…

Caregiving Was a Catalyst to Telling Rare Disease Stories

I have several roles here at Bionews, the parent company that publishes Pulmonary Fibrosis News and other rare disease websites. I started with this humble column and eventually joined the forums team as a co-moderator. My most recently acquired title is “columns lead,” in which I manage and mentor…

How Pandemic Fatigue Is Showing Up in My Life

As we approach year three of the COVID-19 pandemic, I am tired. I’m sure we all are. This pandemic fatigue, combined with the January blues, makes it a difficult time of year for many, and leaves the world feeling heavy and dark. While there is no immediate fix, being…

The Top 4 Words I Use to Describe IPF

I have tried countless times to describe idiopathic pulmonary fibrosis (IPF). In 2019, I tried to explain what it physically feels like, but I still can’t find words that adequately convey how hard living with IPF is, especially as it progresses. I never do the experience justice. Since most…

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