Chronic Illness, Sarcoidosis, and the Absurdity of Racial Assumptions

After writing about winter tearing up my hands and posting a photo of my cracked, bleeding knuckles, I got an email that was less compassionate and more confused that I was not the race the sender expected. This episode is about sarcoidosis, chronic illness, medical stereotypes, and the exhausting way people reduce human beings to categories instead of meeting them with empathy. It is about what happens when statistics stop being information and start becoming assumptions, and why people living with rare disease deserve to be seen as people first, not demographic surprises. Because pain is pain, illness is illness, and ignorance adds nothing useful to either.

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Transcript

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My hands were already raw when I opened the email, the skin across my knuckles split and burning from the cold. And I remember staring at the screen thinking, surely this cannot be where someone's mind went after seeing a photo of winter chewing through another human being. Hello, and welcome to Thoughts While Surviving Chronic Illness. I'm Tate. Today, I want to talk about the strange and exhausting moment when someone looked at my illness, my Caribbean background, and my hands, and somehow decided race was the real mystery. I had recently published a post called Winter is Tearing Me Apart, which, to be fair, sounds dramatic until winter starts acting like it has a personal grudge against your skin. I wrote about the cold, the dryness, the cracking, the whole glamorous seasonal production. I even included a photo of my hands, because sometimes words are not enough. Sometimes you need visual evidence that your body has been auditioning for the role of man attacked by invisible sandpaper. And then this email arrived. Not kind, not thoughtful, not even weird in an amusing way. Just ridiculous in that very specific internet style, where somebody says something so absurd you have to reread it to make sure your brain did not accidentally insert the stupid on its own. The person was surprised I was not a black man. That was the issue. That was apparently the pressing follow-up after seeing torn skin and reading about chronic illness. Not that looks painful. Not, I hope you're doing okay. Not even winter is evil and should be banned. No. The burning question was how I could possibly be from the Caribbean, have sarcoidosis, and not match the picture they had already built in their head. And I remember thinking, what difference does it make? Honestly, what difference does it make? That is the part that always catches me off guard. Not that racism exists, I am far too old and far too awake for that kind of innocence. It is the sheer commitment to it that amazes me. The energy, the devotion. The way some people keep race running in the background of every interaction, like an app that never closes and drains whatever battery their humanity had left. I did not grow up moving through the world that way. Growing up, I had friends from different races, different religions, different backgrounds, different everything. That was just life. People were people. Kids were kids. We were not standing around with mental clipboards, sorting each other into categories like some miserable little census committee. So when people do this now, it still hits me sideways. I do not look at people and see race first. I see a person first. That should not qualify as a bold social philosophy. That should be basic operating equipment for being around other human beings. But apparently that is asking a lot. What makes it worse is how neatly this kind of thinking gets reinforced by medicine. Spend a little time reading about sarcoidosis, and you will see the pattern immediately. More common in this group, less common in that one. Higher prevalence here, lower prevalence there, sorted by race, sex, geography, age, as though suffering has to be color-coded before anyone can take it seriously. Now, I understand why epidemiology exists. I am not proposing we replace medical research with incense and interpretive dance. Patterns matter, data matters, public health matters. But once those numbers leave the lab and enter ordinary people's heads, they stop being neutral. They become assumptions, they become stereotypes, they become a lazy shortcut for deciding who looks like they belong to a disease and who does not. And that is dangerous. Because once a disease gets attached to a certain image, everybody outside that image becomes easier to miss, easier to dismiss, easier to misunderstand. A patient delays seeking help because they do not fit the stereotype. A doctor delays diagnosis because the patient is not the usual type. A person gets overlooked while the disease does whatever it pleases inside them. That is what I hate. Not the numbers themselves. The way people turn more common in into belongs to. It does not review your ancestry before barging in. It does not politely excuse itself because you are not its preferred demographic. It just shows up rude as ever and starts redecorating your life with symptoms, appointments, fatigue, fear, and enough unpredictability to make a sane person laugh just to keep from screaming. That is what matters. The way it lands in actual bodies, the way it behaves differently in different people, the way some of us spend years trying to get diagnosed, trying to get believed, trying to explain that no, this is not in our heads, and no, there is not one tidy version of what this illness looks like. We are not a pie chart, we are people. That is why the email irritated me so much. It did not just feel ignorant, it felt small. It took a full human being and reduced him to a failed expectation. Imagine seeing someone's injured hands and somehow walking away, more interested in whether the person matched your private casting call than in the fact that they were hurting. That is deranged behavior. I am sorry, but it is. You saw torn skin and landed on race. That was the journey your mind chose to take. Not winter, not pain, not chronic illness, not the weird daily negotiations of living in a body that keeps making its own strange and unhelpful decisions. Just racial confusion like my existence had somehow missed rehearsal. And this is how racism often works, is it not? Not always with shouting and theatrics and the obvious ugliness people like to point at, because it lets them feel morally clear. Sometimes it arrives as assumption, as entitlement, as the quiet belief that another person owes you an explanation for failing to fit the version of them you already invented. That is still racism, maybe untidy, maybe dressed up as curiosity, maybe clumsy instead of grand, but still the same stale instinct to reduce somebody to a label and act surprised when they refuse to stay there. I am tired of it. I am tired of people treating illness like a demographic puzzle instead of a human reality. I am tired of identity becoming more interesting to strangers than suffering. I am tired of the way categories keep getting shoved to the front of conversations where compassion should have been standing there first. Because the truth is, knowing my race changes absolutely nothing useful about my pain. It changes nothing about the cold splitting my skin. It changes nothing about sarcoidosis and the ways it can show up in a life. It changes nothing about the fatigue, the uncertainty, the long haul of chronic illness, or the private negotiations people like me are already having every day just to keep going. It changes nothing. And if your first response to somebody writing honestly about illness is to wonder whether they line up with a stereotype, then the issue is not the writer. It is your worldview. That is the thing that needs examining. Illness is isolating enough? Rare disease is lonely enough? The last thing patient communities need is the same old nonsense creeping in and chopping people up into categories before they have even had the decency to say, that sounds hard, I'm sorry. That would have been enough. More than enough, actually. People with sarcoidosis come from everywhere. They look like everybody and nobody. They do not all have the same symptoms, the same severity, the same timeline, or the same story. The disease is already complicated enough without people sprinkling prejudice on top, like an unnecessary seasoning. And yes, as a chef, I hear the irony in that sentence. But trust me, some things need less seasoning. Much less. So, to the person who sent that email, I never replied because your message did not deserve a debate. It deserved a long blink and a delete key. You seem to think race was the missing clue that would make my painful hands and my Caribbean background make sense to you. It is not. My answer is simple: human. Just human. Not because I am pretending race does not exist in the world, it does. It affects healthcare, opportunity, safety, and how people move through life. I know that perfectly well. But basic human worth should never have race as the headline. Compassion should never have race as the gatekeeper. And illness should never become less important than whether the person's suffering fits somebody else's expectation. There's already too much pain in this world to waste time on that nonsense. So, yes, winter is still mean. My skin still behaves like it has entered into a private pact with dry air. My body still likes to stage dramatic little rebellions. But I am not here to satisfy anyone's fantasy about what illness is supposed to look like or who is supposed to have it. I am here to tell the truth about living through it. And the truth is simple. Sarcoidosis does not care what color you are. The cold does not care either. Ignorance, unfortunately, seems very committed to the subject. I wish people would do less sorting and more listening, less assuming and more noticing, less staring at the label, more seeing the person. Because sometimes someone is not asking to be decoded. Sometimes they are just telling you they are in pain, and the decent thing to do is believe them. 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. Sarkoidosis 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 you want to send a short message, use the text link in the show notes. I can read and reply there, and only the last digits of your number are visible to me. For longer messages, use the website contact page instead. 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.