Why I Don’t Say I Suffer From Sarcoidosis

The words we use for chronic illness matter more than most people realize. In this episode, I reflect on a question my wife asked back in 2011, a question that changed the way I talk about sarcoidosis, heart failure, and illness itself. I share why I’ve never been comfortable saying I “suffer from” my diagnoses, and why that distinction became about more than language. It became about dignity, identity, and survival. Chronic illness is exhausting, frightening, and sometimes brutal, but the words we repeat to ourselves can shape how we carry it, and whether we let it become the whole story.

Transcript

SPEAKER_02 0:14

I can still hear that question the way you hear a plate crack in a quiet kitchen, sharp enough to stop everything for a second. Because one minute I was just talking, not trying to have a revelation, not trying to reframe my life. And the next minute, I was standing in the middle of an ordinary moment that suddenly didn't feel ordinary anymore. Hello, and welcome to Thoughts While Surviving Chronic Illness. I'm Tate. Today I want to talk about why I don't say I suffer from sarcoidosis and why that choice of language ended up carrying more weight for me than I expected. I was talking to my wife the other day about something that happened years ago, and it came back with that strange force old memories sometimes have, where they don't drift in gently like some nice little recollection. They arrive like they own the place. One second I was in the present, probably thinking about dinner, whether I had enough energy to make it through the day without my body filing some new complaint, whether the dog needed something, whether I needed something. And the next second I was back inside that old conversation so clearly, it felt like somebody had turned on a light in a room I forgot existed. At the time I had received an email from someone who said they had suffered from sarcoidosis for many years. I repeated that to my wife in passing, just casually. I wasn't trying to start a debate. I wasn't trying to get philosophical in the living room. I was just talking, the way people talk when they think they're saying something normal. And she stopped me and asked, Why do people say that they suffer? That was it. No dramatic pause from the heavens, no soundtrack, no choir, no cinematic weather event. Just one question dropped into a regular conversation, and suddenly my brain did that thing where it opens the cabinet, finds one odd ingredient, and then can't stop staring at it. Why do people say that they suffer? Not why do people get sick? Not why does the body betray us in such imaginative and deeply insulting ways? Not why do bad things happen? Just that one question. Why do people say that they suffer? And the more I sat with it, the more I realized the question wasn't only about pain. It wasn't only about illness. It was also about language, about the words we reach for without thinking, and about the way certain phrases get said so often that they stop sounding like choices and start sounding like facts. Because once that word was sitting there in front of me, I had to actually look at it. Suffer. That word follows chronic illness around like it's on payroll. Doctors use it, articles use it, fundraising language uses it, family members use it, strangers use it, support groups use it. Everybody seems to reach for it automatically, usually with a face that says compassion, but sometimes slides just a little too close to pity for my comfort. And to be clear, I'm not saying the word is wrong for everyone. I'm not here to go around confiscating people's vocabulary like some grumpy language inspector with a clipboard and orthopedic shoes. If somebody says they suffer, and that is the truest word for what they live with, then that is their word. I respect that. I mean that sincerely. Because chronic illness can be brutal. Pain is real. Fatigue is real, fear is real, grief is real, loss is real. The constant low-grade stress of wondering what your body is going to do next is real. The irritation of dealing with medications, appointments, insurance, tests, side effects, billing nonsense, and the occasional medical letter that arrives in the mail looking like it was personally designed to raise your blood pressure is very real. I'm not denying any of that. But when I thought about the word for myself, I realized I had never really used it that way. I never said I suffered from sarcoidosis. I never said I suffered from heart failure. And back then, I never said I suffered from pulmonary hypertension. I had pulmonary hypertension, and it reversed itself, a fact that still baffles doctors. Even then, with all of that sitting in my life like a pile of diagnoses, nobody would have voluntarily ordered. I still didn't use suffer.

SPEAKER_01 4:38

I said I had those conditions. I lived with them. I managed them.

SPEAKER_02 4:44

I carried them around like rude tenants who never paid rent and had opinions about the thermostat. That I did not say I suffered from them. That might sound like a tiny distinction. The kind of thing somebody rolls their eyes at and says, Well, okay, technically. Fair enough, I get that. On the surface, it sounds small, maybe even fussy. Maybe like the kind of thing only somebody with too much medical history and too much time spent in waiting rooms would sit around analyzing. But words are almost never small once they get inside your identity. When I say I have sarcoidosis, it feels true. It names what is there, it does not deny it, it does not sugarcoat it, it does not pretend I'm somehow floating above reality in a cloud of motivational nonsense. It just tells the truth plainly. I have it. That sentence leaves some room for me to still exist. When I say I suffer from sarcoidosis, something shifts, the center of gravity changes. Suddenly the illness becomes the entire structure of the sentence, and I become the person pinned beneath it. The diagnosis gets top billing, bright lights and dramatic music, and I'm reduced to a supporting character in my own body. I never wanted to hand it that much authority. But it doesn't mean I was in denial. Denial is hard to maintain when your body keeps sending official memos. I knew what I was living with. I knew fear. I knew limitation. I knew what it meant to wake up and wonder what kind of day my body had decided to hand me. I knew what it meant to live in uncertainty so often that uncertainty started to feel like furniture. I knew what it was like to have serious diagnoses attached to my name. I knew what it was like to look at a medical reality that had no interest in whether I felt emotionally prepared. But still, suffer never felt like the word that fit me. Part of that, honestly, is probably stubbornness. I can admit that. I've never been especially gifted at quietly accepting nonsense. I'm not elegant about absurdity. If life presents me with something ridiculous, unfair, or deeply inconvenient, I do not become some glowing picture of serene acceptance. I become the guy making a face in the corner, silently arguing with reality on principle. And that same part of me showed up in how I talked about illness. I did not want to narrate my life as one long collapse. I did not want my internal voice sounding like the trailer for a prestige medical tragedy. I did not want to keep repeating language that made me feel smaller every time I heard it. Because language matters. It matters in the way other people see us, yes. But maybe even more than that, it matters in the private running commentary we live with all day long. And if you live with chronic illness, you know exactly what I mean by that commentary. Some of it is practical. Did I take my meds? Why am I this tired? Is this a new symptom or just the deluxe remix of an old one? Should I sit down? Should I lie down? Should I push through? Should I stop pretending I can push through? Did that pain move or is that a different pain? Very glamorous material, real red carpet stuff. But underneath all of that, there's a bigger question always humming somewhere in the background. Who am I inside this body now? What does this illness get to claim? What parts of me are still mine? The language we use feeds those questions whether we realize it or not. I think we sometimes treat words like harmless little decorations, like they just sit on the surface of things and don't really do much. But they shape atmosphere, they shape tone, they shape the story we believe we're living in. And no, I do not mean that in some glittery inspirational poster way where you choose positive language and suddenly your organs apologize and start behaving. If that worked, nobody would need specialists. We'd all just be treated with throw pillows and aggressively hopeful mugs. That is not what I mean. What I mean is something quieter than that, something more grounded and honestly more useful. The mind hears what the mouth keeps repeating. The spirit, if you want to call it that, hears it too. And when you are already carrying fear, uncertainty, exhaustion, and pain, the last thing you need is language that keeps pressing your own face further into the floor. For me, saying I have sarcoidosis did something important. Saying I have heart failure did something important. It let me tell the truth without surrendering the whole emotional tone of my life to the diagnosis. It made room for steadiness. It made room for self-respect. It made room for the fact that I was still a whole person, not just a collection of alarming nouns. Because that mattered to me, and it still matters to me. These illnesses affected my life. Of course they did. They affected my energy, my plans, my fears, my relationships, my marriage, my work, my future, my sense of self, and the ordinary rhythm of daily living. They changed what I could do, how I thought, how I planned, and what I had to carry. But they were not all of me. I was still me, still a husband, still a chef, still somebody with opinions, humor, bad days, decent days, ridiculous thoughts, and very limited patience for nonsense. Still somebody who could be scared and grateful in the same hour. Still somebody who could laugh in the middle of hard things. Still somebody who could be one insurance phone call away from becoming a full-time profanity consultant. That matters. Because the word suffer always felt too flattening to me. It reduced a complicated, shifting, deeply human experience to one emotional posture. And anybody who actually lives with chronic illness knows it is never just one thing. Yes, illness can be painful, but it can be frightening, it can be exhausting, it can be humiliating, it can be lonely, it can be infuriating. It can take things from you that you never wanted to lose. But it can also be absurd. It can be boring, it can be intimate. It can make you notice small kindnesses with a kind of sharp gratitude. It can make you furious over paperwork at 10 in the morning and deeply moved by a tiny act of tenderness at 10.30. It can make you laugh in the middle of a mess because honestly, what else are you going to do? It can strain relationships. It can deepen them. It can make you feel fragile one hour and stubborn the next. Sometimes both before lunch. To call all of that suffering felt too narrow for me, too blunt, too tidy, too one note for something that is, in reality, messy and layered and changing all the time. That was the real problem I had with it. It narrowed the whole experience down to a single emotional note, and I did not want to live inside that narrow. Back on that day, I don't think I fully understood how much that realization would stay with me. I just knew I couldn't unhear my wife's question. It had lodged itself somewhere deep. Why do people say that they suffer? And somewhere in sitting with that, I started to understand that while I had no say in whether I got sick, I did have some say in how I framed the experience to myself. That mattered then, and it matters now even more. Because language around illness tends to swing between two extremes, and honestly, both of them get on my nerves. On one side, there's the tragedy script: endless suffering, endless loss, endless pity. A person gets sick and suddenly the entire world starts talking about them like they've been swallowed whole by sadness and can no longer appreciate a joke, enjoy a meal, be annoyed at the dishwasher, love somebody properly, or have a personality. And on the other side, there's the triumph script: warrior, fighter, inspiration, hero. As if every diagnosis comes with a mandatory cape and a speaking tour. As if sick people owe the public a lesson in bravery because apparently it's not enough to survive. We also have to make it uplifting for the audience. I find both of those scripts exhausting. Some days I am not tragic. Some days I am not inspiring. Some days I'm just a guy trying to get through the day with enough energy to function and enough patience not to launch my phone into another zip code after dealing with some piece of medical bureaucracy designed, I assume, by lizards with clipboards. Some days I'm reflective. Some days I'm grateful. Some days I'm angry. Some days I'm tired in that deep, strange way that feels like your bones got bad news before the rest of you did. Some days I'm held together by sarcasm and snacks. That is also chronic illness. That counts too. So when I say I have sarcoidosis, instead of saying I suffer from sarcoidosis, I'm not trying to be poetic. I'm trying to be precise. I have it. It does not get to have all of me. There's freedom in that sentence. There's dignity in it. And I want to be careful here because this part matters. If you use the word suffer for your own life, I am not correcting you. I'm not grading anybody's emotional vocabulary. Chronic illness is personal, pain is personal, fear is personal. The words that feel true are personal. Some people truly do feel that suffering is the right word for what they live with. And I would never tell them they're wrong about their own experience. But I do think it's worth pausing just for a second and asking whether the words you use about your illness are helping you hold your ground or quietly helping the illness take up more of your identity than it deserves. Not cure you, not heal you by magic, not erase reality. Words are not medication, they are not oxygen, they are not treatment, they are not surgery, they are not rest. They are not some enchanted solution wrapped in a nice sentence. But they can still shape the way you stand inside your own reality. They can shape whether your internal voice sounds defeated or steady, whether it leaves room for your humanity, and whether it names the damage without making the damage the whole story. Sometimes healing is not only about what changes in the body, sometimes it is also about what changes in the way you speak to yourself while living in that body. And that matters. When I think back now to who I was back when my wife asked that question, carrying diagnoses that sound heavy even in casual conversation, I can still feel the weight of those words. Sarcoidosis, heart failure, pulmonary hypertension. Those are not airy little words. They don't float into a sentence and politely disappear. They land hard. They change the room. But even then, I knew I did not want them to become a prison. I wanted room around them. Room for humor. Room for tenderness. Room for ordinary life. Room for irritation. Room for love. Room to still be fully myself, not just some medically footnoted version of myself. And oddly enough, all of that began with one simple question in one ordinary conversation with my wife. Why do people say that they suffer? Maybe people suffer because pain is real. Maybe they suffer because fear is relentless. Maybe they suffer because illness takes things without asking permission and then expects you to keep making grocery lists like nothing happened. Maybe they suffer because the world often responds to sickness with pity on one side and platitudes on the other, and neither one is especially nourishing. But maybe sometimes we also suffer because we absorb language that tells us our pain is the whole story.

SPEAKER_01 16:49

I don't want that to be the whole story.

SPEAKER_02 16:52

I have lived with serious illness. I have been frightened. I've been exhausted in ways that are hard to explain unless someone has lived it too. I have had nights that felt endless. I have had days that felt like walking through wet cement with a smile pasted on for public use. I have known the emotional weight of diagnosis. I have known the strange mental math of trying to build a meaningful life while carrying things that do not leave when the appointment ends. None of that is small.

SPEAKER_00 17:22

None of it is pretend. But I am still here. Still living. Still loving. Still thinking.

SPEAKER_02 17:33

Still laughing. Still muttering at life now and then like a chef whose sauce broke five minutes before service. And now somehow everybody wants calm leadership. That may not look dramatic. It may not fit the movie version of survival. But it is not surrender either. So if I could say one thing now, looking back on that moment with a little more age and a lot more mileage on me, it would be this: choose your words carefully, especially the ones you use about yourself, especially the ones you say often enough that they start sounding permanent, and especially the ones that keep echoing after the room goes quiet. Maybe suffer is your truth, and if it is, I honor that. But maybe it isn't. Maybe there is another sentence waiting for you, one that tells the truth without burying you under it, one that names your illness without handing it the deed to your identity, one that lets your body hear something steadier, something kinder, something stronger. Maybe it seems like a tiny shift, maybe even a silly one. But when you live with chronic illness, you learn to respect anything that helps you carry the weight with a little more steadiness and a little more dignity. So I'll say it the way I always have.

SPEAKER_01 18:48

I have sarcoidosis. I have heart failure.

SPEAKER_02 18:53

These things are part of my life, but they are not the definition of it. I do not deny them. But I do not bow to them either. And that's one of the strange things about living with illness. On paper, it may be called rare, but once it shows up in your body, your lungs, or your heart, it stops feeling rare pretty quickly. Sarcoidosis is only rare until you're the one living with it. I'm Tate, and this is Thoughts While Surviving Chronic Illness. Thanks for being here. If this episode hit home, there's a text link in the show notes where you can send a short message. And yes, I can read and reply. I only see the last digits of your number, so for anything longer, or if you want to make sure I can answer properly, use the website and send me a message there. And if you'd like to do something tangible to help people living with sarcoidosis, please consider making a donation to the Foundation for Sarcoidosis Research, or FSR, at stopsarchoidosis.org. I'll also put a link in the show notes. And if you enjoyed this podcast, please rate, review, and share it. New episodes drop every Tuesday and Friday. So until next time, stay safe, be happy, and most of all, keep breathing.