When Sarcoidosis Meets Customer Service: The Day Prednisone Drove the Bus

I have a real pet peeve with rudeness. It’s not quirky. It’s not cute. It’s not one of those “oh, that’s just how I am” traits you trot out at brunch like a fun little garnish. Rudeness makes my eye twitch. It makes my blood pressure spike—ironically, usually right before someone tries to wrap a communal cuff around my arm like we’re all sharing the same pair of socks.

And yes, I’m saying it: customer service includes healthcare. Especially healthcare. I know some people flinch when you say that, like you just called a surgeon an employee at Best Buy. Relax. I’m not saying nursing isn’t a skilled profession with real stakes. I’m saying when you work with the public—sick, scared, immunosuppressed, exhausted public—basic decency is not an optional upgrade. It’s not a premium subscription. It is the job.

This story takes place back in 2011, when I was still deep in what I lovingly refer to as my “angry stage” of sarcoidosis. If you’ve lived with a chronic illness for any length of time, you know the stages are not neat. It’s not five tidy emotional bins you cycle through in order while a therapist nods politely and hands you tissues. It’s more like: acceptance on Monday, fury on Tuesday, bargaining on Wednesday, grief on Thursday, and by Friday you’re laughing at a meme about organs just… freelancing.

In 2011 I was also on high-dose prednisone.

If you’ve never been on high-dose prednisone, congratulations on your stability and your ability to experience emotions without fireworks. If you have been on it, then you already know there is a specific kind of demon that lives just under the surface—quietly tapping its foot, waiting for someone to say the wrong thing in the wrong tone at the wrong moment. Prednisone doesn’t just raise your appetite. It raises your volume. It raises your sense of injustice. It raises the urge to deliver a monologue that would get you escorted out of a Walgreens.

So there I was, heading in for an appointment with my pulmonologist. He’s part of a large medical group, which means sometimes you get the nurses who know you—who already understand that you are, in fact, “a bit particular” about germs—and sometimes you get someone new. The seasoned nurses had learned my rhythm. They knew I wasn’t trying to be difficult. I was trying to be alive.

Because here’s the part people forget: sarcoidosis can be unpredictable. Steroids can suppress your immune system. Add in the reality that doctor’s offices are basically tiny airports for viruses—people passing through, breathing in the same recycled air, touching everything, coughing into their hands like it’s a hobby—and suddenly your “eccentricities” start looking a lot like common sense.

This day, it was a new nurse.

She was brisk in that way that isn’t efficiency, it’s irritation. Like your presence was an inconvenience she’d been forced to schedule between her lunch and her patience running out. She grunted directions to which room I needed to go to, and I followed her down the hallway like a polite adult who was already rehearsing in his head how not to lose it in public.

She brought me into the exam room and I noticed something immediately: the paper on the exam chair was very obviously not changed.

Not “maybe it’s fine if you squint.” Not “perhaps it’s a new brand of paper that wrinkles easily.” No. This was the kind of crumpled, sat-on, lived-in paper that tells a story. It had wrinkles where wrinkles shouldn’t be. It had the clear outline of where someone else had been sitting, and I’m sorry, but if you’re going to ask me to put my body—my immunosuppressed, steroid-marinated body—on that table, you’re not going to gaslight me into believing the ghost of someone else’s appointment is “clean.”

I said, calmly, “Could you please change the paper?”

She looked at it, looked at me, and said, “It’s clean.”

Now. I want to be clear. I am not a person who enjoys conflict. I don’t go around insulting people. I don’t shout. I don’t slam doors. I don’t stand in public places performing interpretive rage. If I have an issue, I either say nothing and let it pass, or I speak up respectfully and, if needed, I bring it to a supervisor. I’ve worked in service. I know what it’s like to have someone treat you like you’re not human. That’s not my thing.

But in that moment, with that paper, and that tone, and that year of my life… I could feel the prednisone demon sit up straighter.

I said, still calm, “No, it’s not. Please change it.”

She sighed—dramatically, like I had asked her to reupholster the entire chair—and then she pulled off only the area where the previous person had been seated. Just the little strip. Like she was tearing off a tiny bandage and expecting applause.

I stared at the remaining paper and thought: So we’re doing partial hygiene now?

I said, “Could you please change the entire sheet?”

Because what do I know about the person who was here before me? Did they sit up straight the whole time? Did they lie back? Did they have a rash? Open sores? A back full of adhesive residue? Maybe they were perfectly healthy and freshly showered and wrapped in a protective bubble of antibacterial spray. Or maybe not. The point is: I don’t know. And I shouldn’t have to gamble with my skin because someone’s annoyed.

She got visibly irritated, dramatically ripped the entire length of paper off, and slapped a fresh sheet over the table with the kind of energy you reserve for people who return a sweater without a receipt.

I said, “Thank you.”

She grunted, never looked at me, pointed at the table and said, “Sit.”

And like a good puppy—because yes, I was still trying to be the well-behaved patient who doesn’t end up as the “difficult” note in someone’s chart—I sat.

But inside, I was already simmering.

Then she proceeded to remove the blood pressure cuff from the wall to take my pressure.

Now, I have a thing about blood pressure cuffs. I have written about this before. That cuff is a communal item. It goes from arm to arm all day. Sweaty arms. Coughing arms. Arms that have been on subway poles. Arms that have been in urgent care. Arms attached to toddlers who licked a shopping cart. And we’re just… supposed to accept that it has never been wiped down? That it lives its life untouched by disinfectant, like it’s a sacred artifact?

So, as I always do, I asked politely, “Could you please wipe the cuff before you put it on me?”

She looked at me like I had just requested she perform surgery with a spatula.

She said, “We don’t do that.”

“I know,” I said, still trying to keep my tone normal. “That’s why I’m asking. There are sanitary wipes in the cupboard under the sink. Could you please wipe it before using it on me?”

And this is where her attitude shifted from “brusque” to “openly disrespectful.”

She sneered and said, “Boy, you’re a fussy one, aren’t you?”

Then she laughed.

Not a friendly laugh. Not a “wow, you’re thorough” laugh. It was the kind of laugh that says, I’m going to embarrass you so you stop asking for basic care.

And something in me snapped.

Because here’s the part that’s hard to explain to people who don’t live in this body: when you have sarcoidosis—when you’ve been poked and prodded and scanned and medicated and side-effected and “we’ll keep an eye on it”’d for years—you develop a relationship with medical spaces that is already complicated. You want to trust them. You need to trust them. You also know, from experience, that you have to advocate for yourself because no one else is inside your skin.

And when you’re on prednisone, your emotional filter is not a filter. It’s a suggestion.

I could have said: “That was rude.”

I could have said: “Please don’t speak to me like that.”

I could have asked for another nurse right then.

I could have called for the supervisor.

I could have done the whole righteous, perfectly worded patient-advocacy speech that I’m sure I would’ve delivered flawlessly in a later shower argument.

But in the moment, my brain chose a different strategy: passive-aggressive precision.

I looked at her calmly and said, “You know what’s actually fussy? Getting sick because someone didn’t want to take ten seconds to wipe a cuff. I’m on prednisone. I have sarcoidosis. This isn’t me being ‘fussy.’ This is me trying not to pick up something my body can’t fight.”

Silence.

She blinked like she was processing the idea that I had a reason beyond “annoying personality.” Like it had never occurred to her that patients aren’t requesting things for sport.

Then she did something I still remember vividly: she tightened her mouth, turned toward the door, and walked out.

She never came back.

A couple of minutes later, another nurse came in. This one didn’t make a face. She didn’t perform an attitude. She didn’t laugh like I was a punchline. She just… continued. Quietly. Professionally. Like we were all adults in a medical building trying to get through the day with a minimum of damage.

And the thing is, that second nurse didn’t act like I had asked for a personal favor. She acted like I had asked for a reasonable accommodation—which it was. She wiped the cuff. She did the vitals. The appointment moved forward. No drama. No power struggle. No humiliation required.

Which brings me back to the beginning: rudeness isn’t a personality trait. It’s a choice. And in healthcare, it’s a dangerous one.

Because it’s not just about my feelings being hurt. It’s about what happens when patients stop asking.

What happens when someone with sarcoidosis—or heart failure, or asthma, or cancer, or any condition that makes them more vulnerable—gets mocked for asking for basic infection control? They may never ask again. They may sit on that wrinkled paper. They may let that cuff wrap around their skin without question. They may leave the appointment feeling small, embarrassed, and less likely to advocate for themselves next time. And that’s where the real harm lives.

I think about that day sometimes, and I wish I had been calmer. I wish I had been my best self. I wish prednisone hadn’t been in the driver’s seat, honking the horn, flipping off strangers, demanding immediate justice at highway volume.

But I also know this: I wasn’t wrong to ask.

I wasn’t wrong to want clean paper.

I wasn’t wrong to want a wiped cuff.

I wasn’t wrong to want to be spoken to like a human being.

And if you’re reading this as someone living with sarcoidosis—or any chronic illness—and you’ve ever been made to feel like you’re “too much” for asking for basic care, let me say this plainly: you’re not too much. You’re informed. You’re cautious. You’re trying to survive in a system that sometimes forgets survival is the whole point.

Here’s what I’ve learned over time, through more appointments than I can count: you don’t have to be rude to be firm. You don’t have to yell to be taken seriously. You can use a steady voice and simple words and repeat yourself like a broken record if you need to.

“Please change the paper.”

“Please wipe the cuff.”

“I’m immunosuppressed.”

“I’m not comfortable with that.”

“Can we get someone else, please?”

And if someone laughs at you? If someone sneers? If someone tries to shame you into silence?

That’s not your cue to shrink. That’s your cue to escalate—calmly, clearly, and without apology.

Because advocating for yourself isn’t “fussy.” It’s a skill. And for those of us living with sarcoidosis, it’s one we shouldn’t have to master… but here we are.

So yeah. 2011 Me was angry. Prednisone Me was spicy. And New Nurse That Day made a bad choice with her attitude. But the lesson that stuck wasn’t “don’t be difficult.” The lesson was: your body is worth protecting, even if somebody rolls their eyes about it.

And if you need permission to be the person who asks for the wipe, asks for the clean paper, asks for the respectful tone—consider this your signed note from the universe.

If this hit a nerve (or made you laugh in that tired “same” way), I’d love to hear from you. Drop a comment and tell me: what’s the most ridiculous moment you’ve had to advocate for yourself in a medical setting? And if you want more real-life chronic illness stories—equal parts heartfelt and mildly feral—subscribe so you don’t miss the next one.