What You Don’t See: A Chef’s Reflection on Living With Sarcoidosis

Back in 2007, I was doing my usual routine—working, cooking, pretending to be a semi-functional adult—while quietly juggling cardio-pulmonary sarcoidosis and the kind of medical plot twists that make doctors tilt their heads like confused puppies. I didn’t tell many people what was going on because, honestly, I wanted to feel normal for five minutes. And also because explaining sarcoidosis usually ends with someone responding, “Huh?” while blinking at you like you just recited ancient Greek.

And yet, even when I did share, the hit single of the chronic illness soundtrack always came roaring back: “But you don’t look sick.”

If you’ve ever lived with an invisible illness, you know exactly the tone I’m talking about. It’s not cruel. It’s not intentionally dismissive. It’s more like a weird reassurance that somehow misses its mark, as if looking healthy means being healthy. Meanwhile, my body was quietly auditioning for a mash-up of “Grey’s Anatomy” and “Final Destination.”

Cardio-pulmonary sarcoidosis was—and still is—the headliner. When your heart and lungs are the ones writing the script, every day becomes a negotiation. Some mornings, I’d wake up and think, “Okay, breathing shouldn’t feel like a part-time job,” and other days… well, some days I’d lie there gathering the strength to simply stand upright. People assume breathing is automatic. Mine has notes, footnotes, and an asterisk.

Then there was the mini-stroke, which arrived as casually as a text message from an unknown number. A completely random, “Surprise! We just wanted to remind you that your body occasionally freelances without permission.” I survived it, obviously—because I’m stubborn and because apparently I had a few more decades of grocery lists, dog cuddles, and medical appointments to attend.

Let’s not forget the charming structural issue known as the hole in my heart. It was plugged, and yes, it still leaks. I always joke that it matches my personality—warm, emotional, and slightly defective, but still functioning. And because my life likes to operate on the “but wait, there’s more!” system, osteoporosis joined the party courtesy of long-term inflammation and the medications fighting it.

Spinal problems? Oh, those were a joy. Compression fractures and spinal stenosis meant my back’s favorite pastime was reminding me who’s in charge. Imagine trying to sauté vegetables while your spine whispers, “Are you sure you want to bend like that?” Nerve damage chimed in too—tiny electrical zaps and numb spots that make daily life feel like dodging static shocks from an overenthusiastic carpet.

And then there’s the paralyzed diaphragm. Half of it decided to retire early. Try taking a deep breath when only one side is on the clock. Hint: it’s about as satisfying as using a straw with a hole in it. Add two spontaneous lung collapses—because apparently I thought I needed bonus content—and you have a pretty good picture of what invisible illness really looks like from the inside.

But here’s the thing I couldn’t fully articulate back then: I wasn’t sharing any of this to collect pity points. I was sharing it to make sense of it, to let someone else out there know they’re not the only one battling a disease that hides in plain sight. Invisible illnesses have a way of making you feel unseen, even when you’re surrounded by people who love you. Sarcoidosis, in particular, likes to play puppeteer with both your body and your emotions.

Looking back now from 2025, I see a version of myself who was scared but stubborn. Exhausted but hopeful. Quiet but trying—to survive, to understand, to keep going even as my body renegotiated the terms. And I want to reach back to him, that 2007 version of me, and say, “You’re doing better than you think. One day you’ll tell this story with humor instead of fear.”

And to anyone else navigating this unpredictable condition, whether you’re newly diagnosed or decades into the mess: I see you. Truly. You’re not dramatic. You’re not imagining things. You’re not weak because your body has too many tabs open. You’re a warrior in a world that often only believes what it can see.

Keep going. And when you’re ready, tell your story. It matters more than you know.

If this resonated with you—or you just want to yell “same!” into the void—drop a comment or subscribe. I’d love to hear from you.