Kindness in Healthcare and Chronic Illness Care

The paper on the exam table made that thin, crinkly sound every time I shifted. You know the sound. That medical paper that somehow manages to be both disposable and judgmental. I was sitting under fluorescent lights in a room that smelled clean but not comforting, waiting for the appointment to move along. Nothing dramatic had happened. No emergency, no one yelled, no monitor started beeping like a television hospital scene. The task got done. And still, when the door closed, I felt smaller than I had when I walked in. The fluorescent hum seemed louder, and the paper gown suddenly felt too thin. My body was still sitting there, but the room had already moved on without me. Moments like that can travel home with you when you live with chronic illness. Welcome to A Body Rebels, a chronic illness podcast. I'm Tate. A quick medical boundary before I start poking the bear, and by bear I mean the entire healthcare system. This podcast is based on my personal experience. It is not medical advice. Please don't use anything I say to diagnose yourself, treat yourself, stop medication, start medication, change medication, adjust oxygen, change your diet, change treatment, or make medical decisions. For that, talk to your own doctor or another qualified medical professional. Because my body has been running a very poorly supervised science experiment for years. And yes, I choose to have an AI voice narrate these episodes. My own voice gets tired easily, and some days it sounds like an old screen door losing an argument with a humid afternoon. The writing, memories, feelings, perspective, and lived experience are mine. The AI voice helps keep the episode accessible, consistent, and easier to listen to, especially for anyone whose energy is limited too. Today I'm talking about how kindness and healthcare becomes part of care, especially when chronic illness keeps placing me in rooms where I'm already exposed, tired, and trying very hard to stay composed. Back in 2011, I wrote about an interaction with a nurse that bothered me. It wasn't a disaster. Nobody threw a tray. Nobody committed some grand act of cruelty. It was much smaller than that, which is probably why it was so easy for someone else to dismiss. The nurse came in, the task was handled. The words were probably fine on paper. But the tone in the room changed. I felt as if my body had become an item on a list. Someone wanted to cross off quickly. I wasn't a person sitting there with nerves, history, discomfort, and a very thin layer of dignity held together by a paper gown. I was the next step, the next measurement, the next thing to finish before moving on. After I wrote about it, someone named Sean left a comment. His point was blunt. Nurses are not paid to be nice. They're paid to provide professional care. If I wanted warmth, I should look somewhere else. I remember reading that and pausing. Not an angry pause. More like the pause you take when your brain has to set down its coffee and ask, wait, are we really saying this out loud? Part of me understood where that argument comes from. Healthcare workers are overloaded. The system asks too much from them, then acts surprised when everyone inside it starts running on fumes. Nurses, doctors, techs, front desk staff, assistants, and everyone else in that machinery are often expected to move quickly, stay accurate, manage fear, absorb frustration, and keep the day from falling apart. So, yes, I understand why someone might say, just do the job. Take the vitals, ask the questions, follow the protocol, keep everyone moving. But here's where that falls short for patients living with ongoing illness. I want competence too. Very much. I want the person near my body to know what they're doing. I want clean technique, accurate dosages, clear instructions, and a medical chart that does not treat my lungs like a casual suggestion. I'm deeply fond of science. Science and I have had our tense moments, but overall, I'd like it to stay in the room. But competence and kindness are not rivals. That's where Sean lost me. His comment treated kindness like decoration, a little emotional garnish on the side of the real work. Nice, but not necessary. Pleasant, but not professional. I don't believe that. Kindness in healthcare doesn't mean fake cheer. I don't need anyone bouncing into the exam room like they just want a pharmaceutical gift basket. I don't need jazz hands. I don't need a nurse to act as if my appointment is the highlight of the calendar year. I'm chronically ill, not a visiting dignitary. I need steadiness, a normal tone. A little patience. A sentence that gives my nervous system a chance to unclench. Go ahead and have a seat feels different from sit there. I'm gonna lift your sleeve now. Feels different from grabbing my arm as if I'm a stubborn appliance. This part may be uncomfortable, but it feels different from silence, pressure, and surprise. The clinical task might be identical, but the experience inside my body is not. When you live with chronic illness, you spend a lot of time being handled. I don't mean that in a dramatic sense. I mean literally, arms offered, sleeves rolled, chest listened to, oxygen checked, blood drawn, scans ordered, questions asked, symptoms repeated, history reviewed. The body becomes public in these little scheduled ways. And every time I have to bring myself with it. I bring the body, obviously. It insists on attending. But I also bring fear, memory, fatigue, and the private hope that this appointment will not become another story I have to recover from in the parking lot. I've lived with sarcoidosis for twenty years, and after enough appointments, the details start to blur. Dates, offices, parking lots, insurance cards, waiting room chairs, the television in the corner playing something nobody chose. After a while, medical rooms become part of the map of your life, not places you visit once and forget. Places you learn by smell, sound, and routine. The soft knock before the door opens. The snap of gloves. The mouse clicking while you're still answering a question. The printer coughing up paperwork like it has its own chronic condition. The wall clock moving with the confidence of an object that has never had to wait for test results. I don't remember every reading. I don't remember every follow-up instruction unless I wrote it down, and even then, my notes sometimes looked like they were taken by a raccoon under deadline. But I remember how people made the room feel. I remember the nurse who spoke gently before touching my arm. I remember being rushed so hard I swallowed my question and carried it home. I can still picture the doctor who looked at me while I was talking, not just at the screen. I still recall the tech who explained the loud noise before the machine made it. And I remember the nurse who treated my fear as information, not inconvenience. A checklist can be completed while the patient disappears inside the process. The boxes can be checked, the vitals can be entered, the appointment can look successful from the outside, while I leave feeling like I took up too much air in a room built for efficiency. That feeling changes what happens next. It can change whether I mention the symptom that sounds vague but worries me. It can change whether I ask the follow-up question. It can change whether I trust the plan enough to follow it carefully, or whether I go home with instructions I heard only halfway because my body was busy bracing. And I know my experience is not the only version of this. Patients who already face bias in healthcare because of race, disability, weight, gender, age, language, income, or being dismissed too many times before, may walk into the room already braced for impact. A clipped tone can confirm a fear they were hoping not to have confirmed. That's why kindness is practical. It affects communication. It affects trust. It affects whether the patient can participate in their own care without feeling as if they're slowing down the assembly line. And I know healthcare workers are under pressure. I know people have bad days. I know fatigue can take the shine off anyone's tone. I've worked through fatigue myself. As a private chef, I've cooked for one family in their home on days when my lungs felt stingy and my energy was quietly packing a suitcase. I've stood at a counter, stirred a pot, adjusted the heat, wiped down the counter, and tried to keep dinner ordinary while my body turned every movement into a negotiation. I know what it means to do careful work while tired. I also know that the person receiving care, a meal, or any kind of help still feels the manner in which it arrives. Being tired doesn't make kindness irrelevant. It may make kindness smaller. It may mean taking one breath before speaking. It may mean explaining the next step in plain language. It may mean giving a warning before touching someone. It may mean letting a patient ask the question twice because fear ate the answer the first time. That isn't extra. That's care reaching the person in the chair. And that's the part I think gets missed when people talk about professionalism as if it requires emotional distance. Professionalism is not coldness. Professionalism is not speed with a badge on it. Professionalism is doing the work well while remembering that the person in front of you is having an experience, not just receiving a service. Healthcare is intimate even when everyone acts casual about it. Someone asks about your body before you've even had a decent handshake. Someone checks your oxygen. Someone listens to your chest. Someone asks you to describe pain on a scale, as if pain has ever respected numbers. Someone tells you what your body is doing, what it might do next, and what fresh nonsense has appeared on a scan. That access should come with care, not perfection. Not theatrical tenderness. Just enough humanity to keep the room from turning into a processing center. I've had appointments where a small kindness changed the whole rhythm. A nurse warmed her hands before touching me. A doctor paused long enough for me to gather my next sentence. A technician told me exactly how long the scan would take and what sound I'd hear first. No one cured me in those moments. No one solved the larger problem, but my body stopped bracing so hard. That can change five minutes. And sometimes five minutes is the piece I need to get through. On the other side, I've had encounters where nothing was technically wrong, and I still left feeling scraped. A sharp tone, a rushed movement, a question asked as if the answer was already annoying. The clinical record would never show that. There's no checkbox for patient left feeling like furniture. But I knew. My shoulders knew. My breathing knew. My silence on the drive home knew. That's why I reject the idea that kindness is separate from care. For patients, the delivery is part of the treatment experience. Clear information delivered with impatience can shut me down. Clear information delivered with steadiness can help me absorb it. A patient who feels safe enough to ask a second question may leave with better instructions, fewer mistakes, and less fear. And no, patients shouldn't have to earn basic warmth by being charming, easy, quiet, grateful, or conveniently uncomplicated. Illness already trains people to shrink in small ways. Apologize for symptoms. Speak faster. Ask less. Thank people for doing their job. Try not to seem difficult. Try not to seem dramatic. Try not to become a problem in the room where you came for help. I've done that. I've edited myself while sitting on exam paper. I've made my fear sound smaller so it wouldn't annoy anyone. I've laughed politely when I didn't feel like laughing. I've said, no, that's okay, when it wasn't okay, because I could feel the appointment running out of patience. And then I've gone home and thought of the question I should have asked. That is why warmth counts. It doesn't have to be large, it doesn't have to be inspirational. A calm tone can be enough. A warning before touch can be enough. A little space for the patient to finish a sentence can be enough. Care is not only what gets done to the body, it's also how the person inside the body is treated while it's happening. And yes, I still think about Sean's comment. Not because I want to spend my limited oxygen debating strangers with the emotional range of unsalted oatmeal. I think about it because it named an idea I refuse to accept. The idea that healthcare can keep the procedure, remove the humanity, and still call itself whole. Not for me. Not after 20 years of appointments, scans, forms, results, waiting rooms, and the particular exhaustion of trying to remain polite while my body keeps generating medical plot twists. With sarcoidosis, unpredictability is not a creative flourish. It's often the next appointment. Kindness won't fix sarcoidosis. It won't erase uncertainty. It won't make insurance paperwork suddenly readable by normal humans. It won't make a hard appointment easy. But it can make the room less sharp. It can keep a frightened person from feeling foolish. It can give someone enough air to ask the question they were about to swallow. And sometimes in healthcare, that small opening is where the real conversation begins. So this episode is for the people in healthcare who still bring steadiness into difficult rooms. The ones who explain before they touch. The ones who don't punish fear. The ones who know that a patient can be brave and still need gentleness. And it's also for anyone who has ever left an appointment carrying the weight of a tone, a look, a rushed sentence, or a silence that followed them all the way back to the car. You weren't being too sensitive. Your body noticed what happened. Mine has too. I'm Tate, and you've been listening to A Body Rebels, a chronic illness podcast. I'm glad you spent this time with me. If this episode brought up something personal for you, you can visit AbodyRebels.com. You can leave a review, send me a message, or leave a voicemail for the show. I do read what comes in, but I'm not able to respond to solicitations, sales offers, guest pitches, or promotional outreach. My inbox has boundaries now. Growth is a beautiful thing. Please follow the show, share it with someone who might need it, and rate or leave a review on Apple Podcasts. New episodes drop every Tuesday and Friday because apparently my body rebels on a schedule and I've decided to make content out of it. And if you're able, please consider supporting the Foundation for Sarcoidosis Research, or FSR, at stopsarcoidosis.org. Your support helps fund research that could change the medical plot twists for so many of us. I'll put the link in the show notes so you don't have to remember it while folding laundry, driving, or pretending you're only going to lie down for 10 minutes. Tiny pronunciation stop before I let you go. It's sarcoidosis, not sarcoidosis. Sarkoidosis. Koi, like the fish. Except this coi comes with specialists, scans, and paperwork that asks for your medication list again, even though you just handed it to someone. After 20 years of living with this disease, the mispronunciation has become a small pet peeve with excellent job security. I'm not proud, I'm just accurate. Until next time, be well, keep breathing, and remember, sarcoidosis is only rare until you're the one living with it.