I Am Not My Job Title (Or My Diagnosis List): Living With Sarcoidosis Without Letting It Name Me

When I moved to the United States almost forty years ago, I didn’t come with a handbook. I came with an accent, a suitcase, and the optimistic belief that people mostly asked questions because they were curious in a normal human way.

That belief lasted about five minutes.

Because one of the first things that hit me—hard, repeatedly, like a revolving door you didn’t see coming—was America’s deep and passionate commitment to asking: “So what do you do?”

Not “How are you settling in?” Not “Do you miss home?” Not “What’s your favorite food and can you teach me how to make it?” No. It was work. Job. Profession. Title. As if your name was just a placeholder until you provided the real identification.

And I’ll admit, at first I answered like a polite person who didn’t want to make things weird. I thought it was small talk. I thought it was a conversation starter. I thought, incorrectly, that it was about connecting.

Then time did what time does: it taught me the truth.

That question isn’t harmless. It’s not neutral. It’s not “Oh I’m just making conversation.” It’s a sorting mechanism.

It’s the world’s quickest little test: Where do you belong in my head? And once people decide where you belong, they adjust their tone, their posture, their respect level, their interest, their willingness to listen. Some people brighten up if the answer suggests you’re in their “aspirational” category. Some people relax if the answer suggests you’re safely in their “not a threat” category. Some people get that faintly bored expression that says, Okay, I now know exactly how little effort to put into this interaction.

That question is a tiny trap door. You step on it, you answer, and you fall into somebody else’s filing system.

The part that still fascinates me—because yes, I’m fascinated and irritated at the same time, a very on-brand combination—is how quickly the categorizing happens. It’s like people don’t even know they’re doing it. Their brains do it automatically, like a phone doing face recognition.

And if you think the job question is a strong category-maker, let me introduce you to the advanced version: the health question.

Because people are also very different toward you when they know you have a condition or two. Or, in my case, a condition or twelve. The moment a diagnosis enters the chat, you’re not just being categorized by a title—you’re being categorized by the version of your life they’ve seen on TV.

And that’s the thing: most people don’t know what a condition actually looks like in a real human body. They know the highlight reel. They know the stereotypes. They know the “symptoms list” like it’s a character description.

So once someone hears you have a chronic illness, they don’t see you. They see the symptoms they’ve been taught to expect.

Here’s where it gets fun. By “fun,” I mean deeply ridiculous.

I have cardiopulmonary sarcoidosis. Heart failure. A leaking PFO closure. An implanted defibrillator. One lung that’s semi-paralyzed. The other fused to my chest wall. Osteoporosis. Diabetes. And a benign tumor on my vestibular nerve.

If you put the expected symptoms of all those conditions into one human package, the average person would imagine someone who is either dead, actively dying, or living under a blanket with dramatic music playing in the background.

So when I walk into a room and I’m upright, conscious, speaking in full sentences, and not emitting ghostly whispers, people get confused.

Medical professionals especially.

I don’t say that with bitterness. I say it with the awareness you develop when you’ve sat in enough exam rooms to qualify for a minor degree. There’s this look that can flash across a clinician’s face—sometimes only for a second—like their mental math isn’t mathing.

They have a picture in their head of what my list should look like in motion. And then there’s me, sitting there, making eye contact, cracking jokes, showing up as an actual person.

And because I don’t fit the mold, I become intriguing.

Not in the “Tell me more about your life” way. More like the “How is this possible?” way. Like I’m an odd case study that learned to talk back.

But here’s the point I’ve had to learn, and relearn, and remind myself of on days when I’m tired of being observed like an exhibit: I am not the sum of my conditions.

I am not a medical list.

I am not a cluster of symptoms wearing pants.

I am not a walking warning label.

Yes, those conditions are part of my life. They affect what I can do, how much energy I have, what risks I carry, what I manage every day like a job nobody pays me for. They’re real. They matter. They’re not imaginary, they’re not “just stress,” and they are certainly not a personality trait.

But they are not me.

And this is where the job question and the diagnosis question become the same question wearing different clothes.

“What do you do?” really means: Where do I place you?

“What do you have?” really means: What story should I tell myself about you?

And I’m here to tell you that I’m tired of people telling themselves stories about me without my permission.

Because I am the man who enjoys going for walks in the park.

I am the man who enjoys long drives in the country—not because I’m escaping anything dramatic, but because there’s something soothing about the road unspooling ahead of you and the world not asking you for your credentials.

I am the man who enjoys strolling on the beach at sunset, when the sky looks like it’s showing off and the ocean is doing that thing where it pretends it’s not powerful.

I am the man who enjoys eating a small cup of gelato at the beach on a cold winter’s day, because joy doesn’t need perfect conditions. Joy is not reserved for warm weather and people with functioning lungs.

I am the man who enjoys a Starbucks grande decaf soy sugar-free vanilla frappuccino in the afternoon, even though saying that out loud makes me sound like I’m ordering a beverage and also solving a riddle. It tastes like comfort. Let me live.

I am the man who hates when people ask what I do for a living.

Not because I’m ashamed. Not because I don’t work. Not because I’m trying to be mysterious like I’m about to pull a cape out of my trunk.

I hate it because I know what the question is doing. I can hear the mental drawers sliding open.

And I hate it because the answer never fits in the box people prepared for it anyway.

Because even if I tell you my profession—yes, I’m a chef—what does that even mean in your head? Do you imagine a reality show? A tall hat? A stressed-out man screaming “Yes, Chef!” at innocent vegetables? Do you picture glamour? Poverty? Prestige? Labor? A hobby? A cute little pastime?

Meanwhile, for me, being a chef isn’t a label. It’s a craft, a pressure, a rhythm, a way of thinking. It’s muscle memory and time management and problem-solving. It’s also the hilariously cruel fact that my body, at times, behaves like it resents my career choice.

And still, it’s not the whole of me.

I’m also the man who hates push-button faucets in public bathrooms that only run for five seconds.

Let’s pause here, because if you’re wondering why I’m bringing up faucets in the middle of an identity manifesto, it’s because that faucet is a perfect symbol of how the world treats people.

Five seconds. That’s what you get. Not enough time to do the task properly. Not enough time to finish what you started. Not enough time to be thorough. Just enough time to frustrate you and make you feel like you’re asking for too much by wanting basic functionality.

Push it again. Push it again. Push it again. Now your hands are wet and you’re doing interpretive dance over a sink.

That faucet is the chronic illness experience in miniature. Constantly renegotiating with systems designed for the “standard user.” Constantly being told, indirectly, that your needs are inconvenient. Constantly having to press the button again—advocate again—explain again—prove again.

And sure, maybe to someone else it’s just a faucet.

To me it’s also a reminder: the world is built for people it considers “normal,” and everyone else is expected to adapt quietly.

So when people ask what I do for a living, or what I have, what they’re often really asking is: How much space are you going to take up?

Because categories are comfortable. Categories let people decide, quickly, what they owe you.

If you’re “successful,” they owe you admiration—or envy.

If you’re “struggling,” they owe you pity—or distance.

If you’re “sick,” they owe you a scripted sympathy line and then permission to change the subject.

If you’re “disabled,” they owe you inspiration if you’re smiling, suspicion if you’re not.

If you’re “fine,” they owe you nothing.

And I have learned that I do not want to live inside what strangers think they owe me.

I also do not want to be the person who performs wellness just to make other people comfortable.

Because that’s another category trap: the moment you don’t look like what they think your conditions “should” look like, you get accused—silently or out loud—of exaggerating, or being dramatic, or “not that sick,” or, my personal favorite, “You look great!”

Thank you. I look great because I got dressed and showed up. I look great because I’m trying. I look great because I’ve had almost four decades to learn how to walk into rooms with my shoulders up even when my insides are negotiating. I look great because I refuse to let my suffering be the only thing visible about me.

But “looking great” does not mean the list isn’t real. It does not mean I’m not managing symptoms. It does not mean my heart isn’t doing its own weird little interpretive dance. It does not mean my lungs aren’t still carrying their complicated history.

It just means I’m still here.

And being “still here” is not the same thing as being “defined by what’s trying to take you out.”

This is why I keep coming back to the same conclusion, even when life tries to drag me into somebody else’s narrative: what I do for a living and the sum of my conditions do not define who I am.

Here’s what defines me: how I get back up after a fall.

Not the fall itself. Not the diagnosis. Not the paperwork. Not the scan results. Not the numbers on a chart.

The getting back up.

The getting up when you’re tired of getting up.

The getting up when the world thinks you should be grateful just to exist quietly.

The getting up when you’ve been reduced to a list and you insist on being a whole person anyway.

That’s what defines me.

And before anyone gets it twisted, I’m not saying resilience is a cute little accessory I wear. I’m not selling a motivational poster. I’m not here to tell anyone to “stay positive” like positivity is a cure and not a mood.

Resilience, for me, is often messy. Sometimes it looks like humor. Sometimes it looks like stubbornness. Sometimes it looks like silence. Sometimes it looks like tears I don’t post about. Sometimes it looks like a man sitting in a car after an appointment, breathing through a moment, gathering himself before he drives home like everything is normal.

Resilience is not a performance. It is a decision made repeatedly, in small unglamorous moments.

It’s also a refusal.

A refusal to be reduced.

A refusal to be categorized into something smaller than I am.

A refusal to let other people’s comfort determine my identity.

I am that man who refuses to be defined by my conditions.

I am that man who refuses to be measured only by productivity.

I am that man who refuses to be summarized by a job title.

I am that man who refuses to let a diagnosis become my name.

I am me.

And maybe this is the part where I’m supposed to wrap it up neatly, tie it with a bow, and hand you a moral. But life doesn’t do neat. Life does real.

So here’s the real: if you live with sarcoidosis, or heart failure, or diabetes, or any chronic condition that forces you into constant calculation, you already know what I mean about categories.

You’ve felt the way people look at you differently once they “know.”

You’ve noticed the subtle shift in tone. The way conversations get smaller. The way people start talking to you like you’re fragile glass. Or worse, like you’re a problem to manage.

You’ve also probably felt the opposite—the pressure to reassure everyone. To be “the good patient.” To smile. To say you’re fine. To be inspiring. To never make anyone uncomfortable with the truth of your life.

I don’t want that for you.

And I don’t want that for me.

I want us to be allowed to be whole, complicated, funny, tired, hopeful, annoyed, grateful, irritated, loving, and human—all at once.

I want us to be more than our medical lists.

I want us to be more than what we do for a living.

I want us to be more than what people can categorize in the first thirty seconds of meeting us.

Because the truth is, a life can’t be understood that quickly. A person can’t be understood that quickly. And if someone insists on understanding you only through categories, that’s not understanding. That’s labeling.

And I’m not a label.

I’m a man who takes walks.

I’m a man who drives into the country.

I’m a man who watches sunsets.

I’m a man who likes gelato in winter.

I’m a man who orders ridiculous Starbucks drinks without shame.

I’m a man who hates five-second faucets with a passion that probably deserves its own support group.

I’m a chef.

I’m a husband.

I’m a pet parent.

I’m a person living with sarcoidosis and a body that likes to keep things interesting.

I’m also not any one of those things alone.

I’m me.

If this hit home—if you’ve ever felt reduced to a job title, a diagnosis, or somebody else’s assumptions—tell me about it in the comments. What’s the question you’re tired of answering? What’s the category people keep trying to squeeze you into? And if you want more posts like this (equal parts real talk and side-eye), subscribe so you don’t miss the next one.