The Strange Math of Chronic Illness: What Sarcoidosis Taught Me About Expectations

People sometimes ask how anyone living with sarcoidosis can stay positive day after day. The answer isn’t motivation, inspiration, or some magical personality trait. It’s something quieter… something most people miss entirely.

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Transcript

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The strange math of chronic illness, what sarcoidosis taught me about expectations. Someone recently asked me how I'm able to stay so positive. I always find that question a little funny, because the honest answer is I'm not always positive, not even close. I have good days, I have cranky days, and occasionally I have the kind of days where the coffee isn't strong enough and the body feels like it's been assembled by a committee that didn't communicate with each other. Living with chronic illness, especially something like sarcoidosis, teaches you pretty quickly that daily life is all relative. What feels like a terrible day to one person might actually feel like a pretty decent day to someone whose body has been negotiating with pain, fatigue, or unpredictable symptoms for years. Perspective shifts when the baseline shifts. For example, when I went to massage school, we had midterms in several classes. In one class I got my exam grade back, and it was a 70%. Now, if you've ever been a student, you know the emotional math that immediately begins happening in your brain. 70%, not amazing, not terrible. But then the brain does something interesting. You realize that 70% is passing, and 69% is failing. That single percentage point suddenly becomes the Grand Canyon, separating two completely different realities. When I first saw that grade, my reaction surprised even me. I wasn't disappointed, I was thrilled. Because when I walked out of that exam, I was absolutely convinced I had failed it, completely bombed it, catastrophic academic disaster. So when I saw that 70%, I felt like someone had handed me a winning lottery ticket. Not because 70% is impressive, but because it was better than I expected. Then something funny happened. Right after that, I got the results from another class. This time the grade was 98%. Now, logically speaking, a 98% should make someone very happy. It's nearly perfect. One question wrong, just one. And my first reaction when I saw that score, shit, not great job. Not nice. My brain immediately zoomed in on the one wrong answer like a heat-seeking missile. One question, one tiny imperfection. And suddenly, the emotional tone shifted from victory to disappointment. And that, my friends, is one of the weirdest little tricks the human brain plays on us. The exact same person. Two objectively good outcomes, two completely opposite emotional reactions. All because of expectation. Life works the same way. When everything seems to be moving along perfectly, we glide through the day in a pleasant little bubble of normalcy. Everything's fine. Then you stub your toe on a chair. Not just a light tap either. I'm talking about the kind where your entire nervous system lights up like a Christmas tree, and you briefly consider filing a lawsuit against the furniture industry. For a moment it feels like the worst thing that has ever happened in human history. Civilizations have collapsed, empires have fallen, but right now the universe has chosen to punish your toe. Everything feels ruined. But that reaction only happens because the day was going well. Now let's flip the scenario. Imagine waking up every morning with a body that has decided to host a long-term medical experiment. Imagine living with something like sarcoidosis. Not just sarcoidosis alone, but the constellation of little bonus conditions that like to travel with it. The aches, the fatigue, the breathing that sometimes feels like your lungs are negotiating with gravity, the medications that help in one way and complicate something else. Maybe the heart joins the conversation too, because apparently organs enjoy team projects. When you live like that, every morning starts from a different baseline. Some days the body cooperates. Some days it behaves like a rebellious teenager who refuses to clean their room. And when that's your starting point, your expectations change. You don't wake up assuming everything will be perfect. You wake up hoping the day will be manageable. And that shift changes everything. Because suddenly the smallest things become victories. You wake up and the pain isn't quite as loud today. Victory. You walk to the kitchen without needing to sit down halfway there. Victory. You take a deep breath, and your lungs decide to cooperate for once. Victory. You look out the window and see a bright red cardinal sitting on a branch outside. Just sitting there like it has nowhere important to be. And in that moment you notice something most people rush right past. You can see that bird. Your eyes work, you can hear it if it chirps, your ears work. You can walk to the window to look closer. Your legs work. Your brain can take that moment in and recognize that something small and beautiful just happened. When you live with a chronic illness, moments like that become incredibly valuable. Because you realize something important. You're not just alive, you're living. Even if some days require a little more effort than others. Sometimes breathing feels heavier than it should. Sometimes energy arrives in short, unreliable bursts. Sometimes the body reminds you very clearly that it has opinions about how the day will go. But you're still here, still noticing things, still experiencing the world. And when your expectations start from a place of uncertainty, gratitude becomes easier to find. Not because you're trying to be inspirational, not because someone told you to stay positive. But because reality itself starts revealing small gifts you would have ignored before. Hope starts showing up in unexpected places. Hope for a better tomorrow. Hope that today might surprise you. Hope that the good days will keep showing up when you least expect them. There's a line from one of my favorite artists, Olivia Newton John, that has always stuck with me. She sings, A dream is just a dream till you live it. Peace is just a word till you feel it. Love is always there when you share it. You have strength, you have faith, you have hope. Hope is always here. And that last line is the one that matters most. Hope is always here. Because once you have hope that tomorrow might be better, something interesting happens. You stop measuring life by perfection. You start measuring it by possibility. That shift alone can change the entire emotional landscape of a day. A good day stops being something you expect. It becomes something you truly appreciate. Really appreciate it. The way someone appreciates water after walking through the desert. Because once hope disappears, everything starts shrinking. The future shrinks, possibility shrinks, your sense of direction shrinks. But as long as hope remains, even quietly, you still have something to reach toward. And that's the real answer to the question people keep asking me. How do I stay positive while living with sarcoidosis? I don't try to be positive. I just keep hope alive. Hope that tomorrow might feel a little easier. Hope that the body will cooperate just a bit more. Hope that another good day is somewhere ahead. And when one of those good days arrives, I really appreciate it. Not because life is perfect, but because I know exactly how close 69% can be to 70%. If this episode resonated with you, especially if you're living with sarcoidosis or any chronic illness, I'd love to hear from you. In the show notes, there's a link where you can send me a text directly through the podcast platform. I don't get to see your phone number, so if you'd like a reply, just include your email in the message. Your stories, questions, and thoughts often inspire future episodes. And if you enjoy these conversations about living with chronic illness, consider subscribing to the podcast so you never miss an episode.