POST 15: “Living with Lead in My Lungs” — The Reality of Sarcoidosis

(Part Two of Living with an Invisible Disease)

So. Sarcoidosis.

The word alone sounds like a sneeze and a spelling bee had a baby. But that’s the label I walked out of the pulmonologist’s office with, after months of scans, stabs, and the ultimate game of “Is it cancer or not?” The official notes were a real confidence booster: “…bilateral pulmonary nodules are noted, demonstrating low-level activity on PET scan. Findings are grossly unchanged when compared to prior CT, and may be compatible with sarcoidosis. Neoplastic process such as lymphoma is not excluded.”

Translation? We think it’s this rare inflammatory disease, but we’re not ruling out something worse. Medicine, baby. Gotta love it.

But we called it: sarcoidosis. An autoimmune condition — a wild card of a disease that shows up differently in every person it decides to haunt. Some people barely feel it. Others? It takes the wheel and drives your body into a ditch. I got the deluxe package: lung involvement, chest pain, shortness of breath, and enough fatigue to make a sloth look hyper.

At first, walking up a flight of stairs felt like summiting Everest without oxygen. I’d stop halfway, chest burning, legs weak, heart pounding, wondering if this was just going to be my life now. Talking became a luxury — even short conversations left me winded, like I’d just delivered a TED talk underwater.

But the flare-ups are a different animal entirely.

When one hits, it’s not just “feeling under the weather.” It’s body aches so deep they feel like a really bad flu, except without the courtesy of going away in a week. It’s my skin — especially across my upper back — feeling like it’s been flayed. Raw and wrong in a way that’s hard to explain to someone who hasn’t felt it. It’s a low grade fever that makes everything feel slightly unreal, and a fatigue so heavy that moving from one room to another requires actual negotiation with yourself.

And then there’s the part nobody really talks about — what “managing” actually looks like on the bad days.

I was essentially bedridden for two months. My victories were small and unglamorous: feeding the cats, watering the plants, making it back to the couch without needing to sit on the floor halfway there. Dishes went untouched — not that it mattered much, because cooking felt impossible, so I barely used any. Laundry piled up so high and felt so insurmountable that at some point I just started throwing away dirty socks and underwear and buying new ones. No shame. Survival mode has its own logic.

What I missed most wasn’t productivity — it was my life. Friends I couldn’t see, an office I couldn’t get to, a version of myself that could just… go places and do things without calculating the cost in energy. That loss is quieter than the physical symptoms, but it sits just as heavy.

A year in, I’m better than I was. My chest doesn’t hurt all the time. I can walk up a hill without seeing the face of God. Some days I even forget I’m sick — until my body sends a gentle reminder, usually at the most inconvenient possible moment.

I used to measure my days by output. Productivity. Checkmarks. The old me could conquer a week with a to-do list and still have energy left over. The new me counts victories differently — stairs climbed, full breaths taken, a meal cooked without having to sit down halfway through.

Sarcoidosis didn’t ruin my life. But it sure as hell rewrote it.

And I’m still learning how to read the new version.

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