Learn Your Illness, Save Your Sanity: Sarcoidosis, Doctors, and the Fine Art of Saying “Explain That Again”

There’s a school of thought that we all come to this planet with a preplan. Like we’re up in some cosmic office—clipboards, fluorescent lighting, stale muffins—choosing our “growth opportunities” the way normal people choose elective courses.

Apparently, when I was leaving the soul bank for Earth, there was a breakfast meeting where somebody asked, “What challenges do you want in this lifetime?”

And I, being me, misunderstood the assignment. I thought they were asking what kind of bagel I wanted. So I said, “Everything.”

An “everything” bagel.

Not “everything” as in: collapsed lungs, eye drama, specialist conference calls, and the slow realization that my body treats stability like an optional upgrade.

But look. When you order “everything,” sometimes you get… everything.

Here’s the timeline, because my body likes to keep receipts.

My first collapsed lung—spontaneous pneumothorax—hit in November 2020. In December 2020, I tore the retina in my left eye. Then in May 2021, I had another lung collapse, which eventually led to a pleurodesis to fix it. All of this happened at the height of COVID—when hospitals were tense, visits were basically a fantasy, and every medical decision felt like it came with a side of existential dread.

There comes a point in life where you just stop in your tracks and say, “Eh?”

Not “Why me?” Not “What lesson is the universe trying to teach?” Just… “Eh?” Because at some point your body is doing so much that your soul can’t even come up with a dramatic response anymore. Your spirit is just standing there with its hands on its hips like, “Seriously? We’re doing this again?”

I know I have a list of medical issues, the combination of which has christened me an “extremely complicated case.” Which sounds fancy until you realize it mostly means everyone needs a meeting before they touch you.

I go to doctors’ offices now and they get this excited look—like I’m a rare exhibit. They’ll ask, almost giddy, if they can bring in a student doctor to examine me.

And listen, I get it. Doctors teach. Students learn. That’s how the world works.

But I swear, sometimes the vibe is like they’re about to unveil a new attraction at a museum.

“Here,” they say, “listen to his breathing.”

And the students lean in and hear… air. Just air coming and going from my stage-four scarred lungs. Lungs that, if we’re being honest, should sound like someone crumpling plastic grocery bags inside a wind tunnel. But no—apparently I’m out here breathing like a polite person. Like my lungs are trying to act normal in public even though they’re a disaster privately. Which is relatable.

Then there’s the hospital version of “extremely complicated,” where it stops being amusing and starts being a whole production.

At one point, there was literally a conference call about me. A real one. Between my pulmonologist, my sarcoidosis doctor in NYC, the attending ER doctor, a thoracic surgeon, and the head of admissions. A whole group of highly educated people talking through exactly how to treat me because, as they put it, my case is so complicated.

Nothing makes you feel special like realizing your body requires a committee.

And in all of this—here’s the part people don’t always talk about—there’s one person who has to keep it together. One person who has to be the voice of reason. One person who has to say “no” when a suggestion doesn’t sit right.

And that person is me.

Not because I’m brave. Not because I’m inspirational. But because I have learned the hard way that if I don’t advocate for myself, things can move fast—fast enough that you end up agreeing to something you don’t fully understand because everyone in the room sounds confident and you’re tired and you don’t want to be “difficult.”

If one thing this journey with sarcoidosis has taught me, it’s this: stand up for yourself. Say no when something doesn’t feel right. Look a doctor dead in the face and tell them to explain exactly what they’re going to do and why.

And no, I don’t mean argue. I don’t mean disrespect them. I don’t mean show up with a conspiracy podcast in one hand and a Facebook comment section in the other.

I mean be engaged. Be informed. Be present.

The way I’m able to do that is not by expecting a doctor to simplify everything for me until it becomes baby talk. I don’t need, “Your lungs are sad.”

I need the real words.

So I learned them.

I learned everything I could about my conditions. I learned the medical jargon. I learned how to describe symptoms in a way that doesn’t get shrugged off. I learned how doctors think and how they talk—so when I speak with them, I’m speaking in their language. At their level.

I always amuse myself when I meet a new doctor and go through my medical history using strictly medical terms. The look on their faces is priceless. It’s like watching someone recalculate their approach in real time.

I’ve been asked more than once if I have medical training.

Nope. Just chronic illness training. Which is unpaid, unrequested, and comes with homework.

But here’s the thing: the minute a doctor realizes you know what you’re talking about—and more importantly, you know your body—they respect that. They listen differently. They explain more carefully. They stop giving you the “trust me” version and start giving you the “here’s exactly what’s happening” version.

Doctors love to teach. They really do. But a lot of them only lean into that mode when they can tell you’re genuinely interested in learning what they have to teach.

So yes: learn your illness. Learn the jargon. Learn the terms for parts of your body. A doctor will be grateful to you. And you’ll be grateful to yourself.

Case in point: when I went to the retina specialist, I didn’t walk in and say, “My other eye guy says I have some nerve thing or the other.”

I walked in and said: “I have optic nerve head drusen. The vitreous gel is pulling away from the retina, and my ophthalmologist is concerned the drusen may contribute to a tear.”

Now tell me that doesn’t land differently.

Which explanation gets a better response? Which one tells the specialist that this isn’t just vague worry—it’s a specific concern with a specific mechanism?

When you go to a doctor, don’t just sit there silently like you’re in detention. Go with questions. A list. Written down. Because your brain will absolutely blank out the second someone in a white coat asks you what’s been going on.

And the more you know about yourself—your illness and the medications you take—the more you’ll know what to ask.

Know your medication side effects. Your new issue might be a side effect. Or an interaction. Or a known complication that nobody warned you about because they assumed you’d read the leaflet they printed in eight-point font.

And no question is ever a stupid question.

Last month, my pulmonologist was giving me a hard time about not using my oxygen, and I asked him a simple question that stumped him. He wrote to every other pulmonologist he knew and nobody could answer it.

So I went looking.

I found the answer on a company website and sent it to him. He told me the information was extremely helpful. Then he sent it to every pulmonologist he knew—he’s on a national board—and he started getting thank-you messages back for the information I provided.

Let me say that again: I asked a question. A doctor couldn’t answer it. A bunch of other doctors couldn’t answer it. I found the answer and it got shared widely.

So never think you can’t contribute. Never think you don’t have value in the room just because you’re the patient.

You are the person living in the body. You are the person dealing with the symptoms. You are the person balancing treatment with the reality of daily life. That experience matters.

(And yes—I’ll post a separate blog post about the oxygen info soon, because if it helped that many pulmonologists, it might help someone else who’s sitting at home trying to figure out what’s normal and what’s not.)

So even though I often feel like my body is falling apart slowly, I at least understand what’s happening—if not exactly why. And that understanding has saved me more than once.

I continue to live as normally as I possibly can. I try my best to stay as positive as possible. Some days I succeed. Some days my positivity is more like “I didn’t throw my phone across the room today,” and honestly that counts.

Knowing myself—knowing as much as I can about my conditions—and being observant about changes in my body has saved me many times. Even if sometimes I take a little long to respond, I’ve learned that paying attention is a form of protection.

And if you’re living with sarcoidosis or any chronic illness, I want you to hear this clearly:

Learn your illness. Learn your language. Walk into that appointment prepared. Ask your questions. Make them explain. Advocate for yourself like your life depends on it—because sometimes, it does.

If you’ve ever had to become your own translator, researcher, and bodyguard in a doctor’s office, tell me about it in the comments. What’s the best question you’ve ever asked? What’s the moment you realized you had to advocate for yourself? And if you want more posts like this—especially the upcoming one about that oxygen question—subscribe so you don’t miss it.