Appearances can be deceptive for those living with pulmonary fibrosis

Over the holidays, for the first time in a long while, my home was full of voices, laughter, movement, and the comfort of family. I hosted the gathering, something I hadn’t been able to do in years. For someone like me living with pulmonary fibrosis, hosting a holiday party feels less like a tradition and more like a small miracle.

For months leading up to it, I wondered if I’d be able to pull it off. Would my body cooperate? Would my lungs allow me the stamina? Would I regret pushing myself? Still, I wanted this moment. I wanted my family under one roof. I wanted to feel normal again, even if only for a few hours.

The house buzzed with energy. Food filled the kitchen. Conversations overlapped in the living room. For a while, I forgot about my illness. I wasn’t thinking about oxygen tubing, infusion schedules, or upcoming medical appointments. I was just there — present, engaged, and grateful.

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What people don’t see

What many people don’t realize, though, is how deceptive appearances can be when you live with a chronic illness. Because I wasn’t wearing my oxygen cannula during the visit, some assumed I was “better.” I heard comments suggesting I must be doing well now, and that my illness perhaps wasn’t as serious as they’d thought.

This is one of the silent challenges people living with pulmonary fibrosis face. Even if we appear fine on the outside, others may not realize what we’re going through internally. They don’t see the labored breathing we work so hard to control. They don’t feel the heaviness in our chest or the way fatigue creeps in without warning. They don’t understand that oxygen needs can fluctuate and that not using oxygen temporarily doesn’t mean the illness is gone.

About two hours into the visit, my body began to remind me of its limits. The excitement was still there, but exhaustion quietly settled in. It wasn’t dramatic at first. A quiet heaviness made me want to sit and listen rather than stand and talk. Still, I forced myself to stay so the moment wouldn’t end.

My husband noticed before I did. He pulled me aside and gently told me I was losing color. He said my face looked blue, that something wasn’t right, that maybe I was experiencing hypoxemia. It’s strange how someone who loves you can see what you’ve learned to ignore. Living with chronic illness often means learning to silence your body’s warning signs just to keep going.

I didn’t want to hear it. I wanted to stay in that moment a little longer. I wanted to keep hosting, laughing, and pretending my lungs weren’t failing me. But the truth was undeniable. My body was tired — not the kind of tired a nap could fix, but the profound exhaustion that comes from chronic lung disease.

Grief and gratitude

In that instant, I was flooded with emotion. There was the happiness of being surrounded by family, regaining a role I had lost, and demonstrating that I could still be there for them. At the same time, I felt the weight of exhaustion press down on me, reminding me that I cannot outrun this illness, no matter how much I want to.

There was grief in that realization for the person I used to be, the host who could cook all day and stay up all night without consequence; for the version of myself who didn’t have to calculate energy like a limited currency. But there was also gratitude knitted into that grief.

I’m grateful that I had those two hours. I’m grateful that my home was filled with love. I’m grateful that my husband knows my body well enough to protect me when I forget to protect myself. And I’m grateful that even in exhaustion, I felt alive.

Living with pulmonary fibrosis means constantly negotiating with your body. It means learning that showing up doesn’t always look the way it used to. Sometimes it looks like hosting for a short while instead of all day. Sometimes it looks like sitting down when everyone else is standing. Sometimes it looks like letting others misunderstand your illness because you don’t have the energy to explain it again.

That day reminded me that presence matters more than endurance. I didn’t need to prove anything by pushing myself past my limits. The fact that I was there at all was enough.

I may have been exhausted, but I was also full of gratitude, love, and the quiet pride that comes from reclaiming pieces of myself that illness tries to take away. And for now, that is more than enough.

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.