You Didn’t Deserve This: Sarcoidosis, Shame, and Letting Go of Guilt

The priest closed the book, looked at me, and said, maybe this class isn't for you. And just like that, I was out. Not for fighting, not for swearing, for asking too many questions. And the strange part is, years later, illness showed up and brought those same questions back with it. Hello, and welcome to Thoughts While Surviving Chronic Illness. I'm Tate. Some of you may be patients, caregivers, or even clinicians trying to understand what chronic illness actually feels like. Wherever you fall in that mix, you're welcome here. And if the voice sounds a little different, that's because chronic illness can wear out my own voice. So this AI voice helps me tell the story while the chef rests his vocal cords. Before we start, a quick note from the kitchen. I'm not a doctor, and nothing in this podcast should be taken as medical advice. This is simply one chef sharing how he lives with a body that doesn't always follow the rules. Alright, let's get into today's rambling. I think a lot of us grow up carrying ideas we do not even realize we've absorbed. They settle in quietly, somewhere below language. And then one day life cracks open and there they are, already waiting for you. I grew up Roman Catholic, fully in it. Uniforms, religion class, the whole thing. Not holiday Catholic, not occasional cameo appearance Catholic. I mean the full subscription package. And somewhere in all of that, I picked up this quiet sense that if something went wrong, if something hurt, if something got taken away, then maybe I had something to do with it. Not because anyone necessarily sat me down and said those exact words. It was subtler than that. More like a tone in the room, a way of interpreting suffering, a way of linking pain with blame. So then, fast forward, and you're older, living your life, minding your business, and suddenly you're in a doctor's office hearing a word you never expected to hear attached to your own body. Sarcoidosis. And once that word lands, the mind starts doing what the mind does. It starts rummaging through the drawers looking for a reason. What did I do? Why did this happen? Did I miss something? Did I cause this somehow? Was I too stressed? Did I work too hard? Did I not take care of myself properly? Did I offend the universe? Did God decide I needed a character building exercise and went way too far with it? Because randomness is hard, chaos is rude, and blame, oddly enough, can feel more comforting than uncertainty. If it's my fault, then maybe there's a fix. Maybe I can trace it back. Maybe I can undo it. Maybe I can behave my way out of it. But after a while, that logic starts to break down. Because if illness is punishment, then what exactly are we saying about everybody who is sick? Everybody living with heart disease, diabetes, autoimmune disease, lung disease, chronic pain, cancer, all of it. Are they all somehow guilty? Are their bodies evidence in some cosmic court case? No, that falls apart the second compassion shows up. And I think that was the shift for me. Not some grand spiritual epiphany with a shaft of light through the ceiling, nothing that dramatic. More like a slow realization that one story was hurting me more than the disease already was. So I started looking at it the way I understand things best, which is through kitchen logic. In a kitchen, you can do everything right and still have something go sideways. You can respect the ingredients, watch your timing, use the right technique, keep your station clean, and somehow a sauce still breaks, a custard still curdles, a beautiful plan still collapses in front of you while you stand there looking betrayed by dairy. Variables exist. Heat shifts, humidity matters, timing gets weird, equipment lies, sometimes the oven is in a mood, and bodies, honestly, are even less predictable than kitchens. That helped me more than I expected. I do not have sarcoidosis because I failed some moral exam. I do not have it because I asked too many questions as a kid, or because I made mistakes, or because I somehow earned a body that likes to freelance. I have it because biology is messy, because being human is fragile, because life has always included things that do not make sense. That realization does not cure anything. I wish it did. That would have been very convenient. But it does remove one thing that becomes unbearably heavy if you carry it long enough. Guilt. And once guilt loosens its grip, even a little, another question starts to emerge. A harder question, maybe, but a more useful one. What do I do with this now? That question changes the shape of things. Because bitterness is always available. It is never late. It does not need directions. It will pull up a chair, pour itself a drink, and explain in great detail why you have every right to be furious. And to be fair, sometimes it makes a compelling case. But illness slows life down in strange ways. And in that slower space, other questions start rising to the surface. What matters now? Who am I if I cannot measure myself by output all the time? What kind of life can I build inside limits I did not ask for? For me, the answer kept circling back to something simple. Talking, writing, trying to turn pain into something that might help somebody else feel less alone. Because sometimes what people need most is not a cure. Sometimes it is recognition. Sometimes it is hearing another human being say, This is awful. This is confusing. This is exhausting. And no, you did not cause it. That kind of recognition can do something medicine often cannot. It can return a little dignity to the room. And I think that is why the story we attach to illness matters so much. The symptom is one thing, the meaning we give it is another. If the story becomes, my body betrayed me, that hurts. If the story becomes this is punishment, that hurts even more. And if the story becomes, I must deserve this, that is where shame enters quietly and starts unpacking its bags. Shame is sneaky like that. It does not usually kick the door in. It just sits in the corner and starts narrating your life in the cruelest possible voice. It tells you that your body is a failure, that your limitations make you lesser, that needing help is weakness, that being sick is somehow embarrassing. And that is a brutal way to live. So maybe part of surviving life with a long-term condition is learning how to tell a different story, not a fake story, not toxic positivity with better lighting, just a truer story. I'm sick. This is hard. I did not earn this. I'm still worthy. I'm still here. That does not make the pain disappear. It does not tidy anything up, but it gives you something back, something illness and guilt and shame try very hard to take from you. It gives you back your humanity. Over time, that changes you. You care less about performance, less about pretending you're fine when you are very much not fine, less about meeting some imaginary standard of strength that mostly just rewards silence. And you start noticing other people differently too. You realize everybody is carrying something, some of it visible, some of it hidden, some of it so deeply buried, they probably do not even have words for it yet. Illness did not make me enlightened. I would love to tell you I floated out of this with saintly wisdom in a halo, but no. I'm still me, still sarcastic, still tired, still annoyed by dumb things, still deeply suspicious of any system that claims to have all the answers. But it did make me clearer. Fear used to sit at the center of a lot of things for me. Fear of what would happen, fear of decline, fear of losing function, fear of being reduced to a diagnosis, fear of being seen as fragile, fear of becoming a burden. Now more and more something else sits in that space. Kindness. Not the fluffy kind people slap on mugs, I mean real kindness. The kind that makes room for suffering without turning it into a moral failure. The kind that looks at a struggling body and does not demand an explanation. The kind that says, This is hard, and you still deserve tenderness. And once you start seeing illness through that lens, the old guilt story makes less and less sense. So if you are living with sarcoidosis or heart issues or diabetes or anybody that has decided cooperation is optional, hear me when I say this. You are not being punished. You are going through something difficult. And you are allowed to let the guilt go. You are allowed to stop interrogating yourself like you are both the suspect and the detective. You are allowed to stop trying to find the exact moment you think you ruined your own life. You are allowed to release the idea that pain must always mean you did something wrong. Because once that guilt begins to leave, it makes room for better questions. Not why me. But how do I want to live now? That question matters more than most people realize. Because life inside a body that writes its own rules deserves honesty. It deserves language, it deserves compassion. And sometimes it deserves a tired chef muttering into a microphone so somebody else out there can feel a little less alone. And that's one of the strange things about living with a chronic illness. On paper, it may be labeled rare, but when 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. If this episode resonated with you, follow the podcast so you don't miss the next rambling. New episodes come out Tuesday morning and Friday evening. And if you think someone else might need to hear this, share the episode with them. Leaving a rating or review also helps other people living with chronic illness discover the show. I'm also not able to respond to solicitations or outside projects. Your number always stays private. I never see it. And if you'd like a reply, just tuck your email address somewhere in the message. If you'd like to share more about your experience with sarcoidosis or chronic illness, the contact page on my website is the best place to reach me at TateBasildon.com. Before we part ways, a quick reminder. The stories I share come from my own lived experience. I'm not a doctor, so nothing here is medical advice. This is simply one person trying to make sense of the body he's living in. The narration is AI because my voice gets tired. So very tired. But the writing, the producing, and the heart behind every episode, that's all me. And I hold the copyright for all content. Take gentle care of yourself. Breathe when you can, rest when you need to, and remember, you're still here. And that matters more than you know. Until next time.