@@@@@. Losing My Voice, Keeping My Humor: Sarcoidosis, Symbicort, and the Art of Breathing Anyway

Sarcoidosis has a funny way of making life feel like a rerun you didn’t ask for but somehow keep watching anyway. Same episode, same plot, slightly different guest stars. Today’s installment featured a routine pulmonology appointment, a pulmonary function test I could probably perform in my sleep at this point, and the familiar verdict delivered with professional calm: no change. Nothing better, nothing worse. Just my lungs continuing to be their deeply uncooperative selves.

There’s something oddly comforting about consistency when you live with chronic illness. Not the inspirational kind of consistency people put on mugs, but the grimly reliable kind where you already know the ending. My breathing still isn’t great. It hasn’t been great in years. It’s not dramatically worse, which in sarcoidosis math counts as a win. I left the office with that strange mix of relief and annoyance, because while stability is good, improvement would be better. But sarcoidosis has never been one for ambition.

The last few weeks, though, my lungs decided to add flair. Breathing felt heavier, like my chest was hosting a very rude houseguest who refused to leave or pay rent. Talking required effort, as if every sentence came with a small service charge. I could feel the wheeze before anyone else could hear it, which is always a special treat—knowing what’s coming and being unable to stop it. My pulmonologist listened, nodded, and wrote the prescription we both knew was coming. Symbicort. Again.

Symbicort and I have history. We’re not friends, but we’re not strangers either. We’re more like two people who keep running into each other at family gatherings, exchanging polite nods while pretending there isn’t baggage. I know it helps my lungs. I also know it has a habit of stealing my voice, which feels like an especially cruel joke given that sarcoidosis already roughened it up. Add an inhaled steroid to already irritated vocal cords, and suddenly I sound like a late-night radio host broadcasting from inside a pillow.

My voice, on a good day, is raspy. On a bad day, it’s gravel with feelings. Sarcoidosis decided a long time ago that my lungs weren’t enough and wandered into my larynx like it was exploring a new neighborhood. Vocal cord involvement isn’t rare, but it’s rarely discussed unless you’re actively losing your ability to speak above a whisper. Hoarseness, weakness, fatigue when talking—it all shows up quietly, then refuses to leave.

Throw Symbicort into the mix and things get interesting. Within days, my voice starts to fade. Not in a dramatic, cinematic way, but slowly, inconveniently, like a dimmer switch someone else controls. Conversations become shorter. Phone calls become exhausting. Ordering coffee feels like an endurance sport. With a mask on, it’s even better. I sound like a secret no one asked to hear, muffled and vaguely apologetic.

And yet, I take it. Every time. Because breathing matters more than sounding pleasant. The pattern is predictable now. I start the inhaler, my lungs begin to behave a little better, my voice pays the price, and irritation sets in. After a couple of weeks, I convince myself I’m fine, stop the medication, and then—of course—it starts to really work. That’s when the cycle resets. It’s not exactly a wellness plan, but it’s the one I’ve got.

Sarcoidosis is excellent at forcing these negotiations. You’re constantly choosing between imperfect options, weighing side effects against symptoms, deciding which version of discomfort you can tolerate today. There’s no finish line where you suddenly win. There’s just management, adjustment, and the ongoing process of learning how much you can push without tipping the balance too far.

What people don’t always talk about is how exhausting that constant negotiation becomes. Not physically—though that’s real—but mentally. You wake up every morning wondering which body showed up for the day. The cooperative one, or the one that needs extra coaxing. The one that lets you speak freely, or the one that turns every sentence into work. It’s not anxiety exactly. It’s vigilance. A low-level awareness that never fully shuts off.

Losing your voice, even temporarily, messes with your head in a way that’s hard to explain until it happens. Communication is connection. It’s how we assert ourselves, how we participate, how we remind the world we’re still here. When your voice disappears, you don’t just struggle to talk—you feel strangely absent. Present, but muted. Like you’re watching life from behind glass.

That’s where humor comes in. Not the forced, inspirational kind, but the gallows humor that keeps you afloat when the alternative is screaming into the void—which, ironically, I can’t do very well. So I joke about it. I lean into the absurdity. I narrate my wheezes like they’re part of a poorly rehearsed orchestra. I laugh at the irony of being a chef who can no longer shout “behind” without it coming out as “bee—hhh—nd,” followed by frantic gesturing.

Cooking has always been grounding for me, even now. Especially now. There’s something reassuring about the rhythm of a kitchen, about chopping vegetables while your lungs do their best impression of an accordion that’s seen better days. The sizzle of garlic hitting hot oil drowns out the internal monologue about oxygen saturation and inhaler timing. For a little while, I’m just a person making food, not a patient managing symptoms.

Living with sarcoidosis and heart failure means accepting that progress doesn’t always look like improvement. Sometimes progress is maintenance. Sometimes it’s simply not sliding backward. Some days, success is getting through a paragraph without pausing to catch your breath. Other days, it’s showing up at all. I’ve learned to redefine what a win looks like, because the old definitions stopped applying a long time ago.

There’s also a strange intimacy that develops between you and your own body when it refuses to cooperate. You notice every sensation. Every change. Every small betrayal. You become fluent in your own limits, even as they shift. And while that awareness can be draining, it also breeds resilience. You learn how to adapt. How to reroute. How to keep going even when the path narrows.

I still write. I still cook. I still show up for the people and animals who depend on me. Being a husband and a pet parent doesn’t pause for wheezing lungs or a disappearing voice. There are meals to make, walks to take, lives to share. Chronic illness may dictate the pace, but it doesn’t get to decide whether I participate.

Symbicort and I will continue our complicated arrangement. I’ll take it when I need to. I’ll complain about it when my voice fades. I’ll rest when I have to and push when I can. None of it is elegant, but it’s honest. And honesty matters more than polish when you’re trying to survive something that doesn’t play fair.

Sarcoidosis isn’t a story about constant triumph. It’s a story about persistence. About refusing to disappear just because your body makes things harder than they need to be. About finding humor in the ridiculous moments and grace in the quiet ones. About understanding that your voice is more than sound—it’s presence, intention, and the refusal to be erased.

So yes, I may sound like a polite ghost haunting my own life for a while. I may communicate in half-sentences and raised eyebrows. I may lose my voice and find it again, over and over. But I’m still here. Still breathing. Still laughing when I can. And as long as I can manage that, sarcoidosis hasn’t won anything worth celebrating.

If you’re living with sarcoidosis or another chronic illness and dealing with breathing issues, voice changes, or the endless medication dance, know this: you’re not imagining it, and you’re not alone. This stuff is hard, even when it’s familiar. Especially when it’s familiar.

If any of this sounds like your life—if sarcoidosis has ever stolen your breath, your voice, or your patience—I’d love to hear from you. Share your experience in the comments, tell me what’s helped (or what absolutely hasn’t), and consider subscribing so you don’t miss future posts. This space exists because our stories deserve to be heard, even when we have to whisper them.