The Smoking Backpack: Chronic Illness in Public

A doctor’s waiting room is usually boring. Mine briefly turned into a low-budget suspense film because my portable oxygen backpack looked like it was smoking. Living with sarcoidosis and chronic illness means getting used to equipment, routines, and symptoms that feel normal to you but deeply suspicious to everyone else. What started as an ordinary appointment became one of those strange public moments where illness stops being private and starts becoming a spectacle. It was awkward, absurd, and, honestly, a little funny. Because sometimes the only way to survive the weirdness of living inside a body that makes its own rules is to laugh before somebody calls security.

Transcript

SPEAKER_00 0:14

It's amazing how fast a room can decide you're suspicious just because your backpack looks like it's smoking. Living with sarcoidosis can mean explaining things that really should not need an explanation. 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. All right, let's get into today's rambling. Today's rambling started with a backpack that looked far more criminal than it actually was. I was at my doctor's office years ago for a PET scan follow-up, just a normal appointment. The kind that becomes part of life when you spend enough time in the medical system. Scans, check-ins, more scans, people peering at your insides through machines that cost more than a decent house. For a lot of people, routine means a dental cleaning or getting the oil changed. For some of us, routine means somebody keeping an eye on whether our lungs are behaving like civilized organs. That day I walked in carrying my Helios portable liquid oxygen pack. If you've never seen one, picture a blue backpack with mesh vents on the sides. Inside was a liquid oxygen tank. Perfectly ordinary, at least in my world. The trouble is, liquid oxygen has a flair for drama. When the temperature shifts, it gives off condensation. Sometimes a little, sometimes enough to make the whole thing look like it just stepped off the set of a cheap action movie. And to people who don't know what they're looking at, condensation does not read as condensation. It reads as smoke. For context, this was 2007, and the wounds of 911 were still raw in the American psyche. Most people were still suspicious of anyone with a backpack, especially if they were non-ethnicity specific. I was standing at the reception desk signing in when I heard a voice behind me. Excuse me. That tone was careful, polite. Also the tone of a man who was not entirely convinced he should be standing as close to me as he already was. I turned around and there was an older gentleman looking at me, then at the backpack, then back at me again. He had left himself a very respectable amount of space, the kind of distance people create when they are trying to be courteous while also preparing for a possible explosion. Then he asked, Do you know your bag is smoking? I looked down and sure enough, a cloud of condensation was drifting out through the mesh vents. It did look dramatic. Not dangerous, just dramatic. Like my backpack had taken up cigarettes. Or like Halloween had arrived early and known had told me there would be a theme. So I smiled and said, It's not smoke, it's condensation. The oxygen tank does that sometimes. He nodded, but it was not a fully committed nod. It was more the kind of nod people give when they hear the words, but their survival instincts are still holding a committee meeting. Then I went to sit down in the waiting room. And that should have been the end of it. Of course it wasn't. Because sitting near him were two other women who had clearly watched the whole exchange. You could see it in the glances. One looked at the other, then at me, then at the backpack, then back at the other woman again. There was a whole silent conversation happening entirely through eyebrows. You know that look people get when they think they have identified the situation? When you live with illness long enough, you learn that sometimes you are the oddest object in the room without meaning to be. Sometimes the simplest path is to let people stare, let them process, and hope they get tired before you do. But one of the Karens leaned forward and said with complete confidence, oxygen does not do that. Then she pointed at the backpack. There is still smoke coming out of it. And she said, smoke the way people say felony. That was the moment the room shifted. You could feel it. Other patients started paying attention. The reception area got quiet, and that way public places do when everyone suddenly suspects they might be about to witness something memorable. Not good memorable, just memorable. And that's when I realized that from the outside, especially to the most waspy people in the waiting room, this probably looked terrifying. A man walks into a medical office wearing a backpack that appears to be smoking. That is not exactly comforting imagery. So I stood up, opened the backpack, and pulled out the tank so people could see it. I said, This is a portable liquid oxygen tank. People leaned in a little. Suspicion was starting to turn into curiosity, which is usually an improvement. Then I added, It contains oxygen that is frozen. And because apparently my mouth enjoys making things more theatrical, I followed that with it's not a bomb. That got their attention. Then I said, I'm not a terrorist with a backpack, don't worry, you're safe. I'm just a man with lungs that don't cooperate. And the room cracked. Reception staff laughed. Other patients laughed. Even the gentleman who first approached me laughed. All that tension just fell out of the air at once. You could practically hear the collective exhale. The two women, however, remained unconvinced. They did not laugh. They just stared at the tank, then at me, then back at the tank, like they were still waiting for the part where I revealed I was lying and the thing launched into orbit. People are funny. And honestly, looking back now, I get it. Because living with sarcoidosis, heart issues, oxygen equipment, medications, and all the strange accessories that come with a body that writes its own rules means your normal starts drifting very far from everyone else's normal. You get used to things that would look bizarre to the average person. Tanks, tubing, machines, medication schedules, symptoms with names that sound made up. It all becomes routine to you. Then one day, you catch sight of your own life through someone else's eyes and realize, oh, right. This does look a little weird. That waiting room moment landed harder later than it did at the time. Back then it just felt awkward and funny. Another absurd moment in a life that had already become crowded with absurd moments. But looking back, it was also one of those little reminders that illness doesn't just change your body. It changes how you move through public space. It changes what you carry. It changes what you have to explain. It changes how often you walk into a room already knowing you may need to make other people comfortable with something you did not choose in the first place. That's the part people don't always see. They might notice the tank. They might notice the condensation. They might notice the backpack that looks vaguely suspicious. What they don't see is the reason any of it exists. They don't see the thousand calculations running in the background, how far the walk is, how much energy you have, whether your lungs are cooperating, whether this will be an easy day or one of those days where your own body behaves like an unreliable line cook. And that disconnect is such a strange part of living with long-term illness. Other people see the props. You live the plot. I think that's why moments like that stick with me. Not because they were tragic, they weren't. Not because they were especially dramatic, they weren't. Unless you count elderly suspicion as dramatic, which, to be fair, it can be. They stick because they reveal how private illness can suddenly become public without your permission. One minute you're checking in for an appointment. The next minute you're unintentionally starring in Waiting Room, the musical. It also reminded me how quickly people assign meaning to what they don't understand. A little vapor becomes smoke. Smoke becomes danger. Danger becomes a story people tell themselves before you've even had a chance to sit down. I can't even be that offended by it because if I'm honest, before my own life filled up with specialists and scans and oxygen equipment, I probably would have stared too. Maybe not quite as dramatically, maybe with a little more faith in basic science, but I still would have noticed, albeit I would have enough common sense to know the difference between condensation and smoke. I didn't understand it then, but I do now. A lot of living with chronic illnesses existing inside things that have become ordinary to you and extraordinary to everyone else. That's a lonely kind of gap sometimes. Not always painful, just strange. The strange part is humor helps bridge it. Because in moments like that, you can either become irritated that people are staring, or you can notice the sheer absurdity of what is happening. A room full of adults quietly wondering whether your oxygen pack is about to detonate is objectively ridiculous. And once something becomes ridiculous, laughter starts feeling like the most honest response available. That's one of the quiet lessons chronic illness teaches you. If you don't learn how to laugh, at least occasionally, the nonsense will wear you down faster than the symptoms do. I think my chef brain plays into that too. In a kitchen, weird things happen all the time. Sauces split, timers get ignored, ovens develop opinions, somebody burns something, somebody drops something, somebody swears the recipe was followed exactly when the evidence says otherwise. If you panic every time a situation looks strange, dinner service will eat you alive. So you learn to assess quickly. You adapt. You explain, you keep moving. Living inside a difficult body is not the same as running a kitchen, obviously. One is dinner, the other is your life. Slightly different stakes. But there is a shared rhythm to both. Plans change, conditions shift, something starts venting unexpectedly, you stay calm, figure out what's happening, and try not to let the whole room spiral. And sometimes that means standing in a waiting room, holding up an oxygen tank like a game show prize, explaining to strangers that no, this is not an explosive device. It is just medical equipment with terrible public relations. There's also something else in that moment that stays with me. It reminded me how invisible the real burden can be. People noticed the visible oddity, the vapor, the backpack, the spectacle. But the actual weight of the moment wasn't the condensation. It was the reason I needed the tank at all. It was the body behind the equipment, the lungs behind the joke, the life that had already been rearranged around limitations most people in that room never had to think about. That's the quiet part of sarcoidosis and other chronic conditions. The public sees the visible clue. They don't see the ongoing negotiation. They don't see how your day is shaped by symptoms before you ever leave the house. They don't see the private calculations, the fatigue, the appointments, the constant low hum of adaptation. They just see the one weird thing that slips into public view and think that's the whole story. It never is. And maybe that is why moments like this matter more than they should. Because they reveal how easily people confuse the visible detail with the full reality. A smoking backpack becomes the event. Meanwhile, the actual event is that somebody needs portable oxygen in the first place. That's a much bigger story. Chronic illness doesn't just change your health, it quietly rewrites the life you thought you were living. And sometimes it rewrites it in public. That day ended the way most medical office stories end. My name was called, I picked up the backpack, the condensation was still drifting out like it had not learned a thing from the conversation. And as I walked past those two women, they watched that tank like it might suddenly perform a trick. And my dark humor took over. I couldn't resist. I raised the backpack, smiled, and whispered, Boom. The old man laughed. The women? I'll let you guess. After a while, you start to notice that not every misunderstanding needs a grand speech. Sometimes you explain what you can. People believe what they're willing to believe, and then you go to your appointment because your actual life is still happening. That, more than anything, may have been the real lesson. Not everybody will understand what they're seeing. Not everybody will get it, even after you explain it. Not everybody will stop thinking your oxygen tank looks suspicious. And you still have to keep living. Looking back, that's really the heart of it. Public moments like that are funny, yes, but they also expose something deeper. Life with illness often means carrying a reality other people don't recognize until it interrupts their comfort or their expectations. Then suddenly they notice, suddenly they're curious, suddenly they have opinions about oxygen. And maybe that's okay. Because sometimes those awkward little public collisions are the only moments people get to glimpse a life they would never otherwise have to imagine. A moment of confusion becomes a moment of learning. A suspicious look turns into a laugh. A room full of strangers gets reminded that the world contains experiences far outside their own. That does not make the experience easy, but it can make it human. So when I think back on that day, I don't mostly remember the suspicion. I remember the absurdity. I remember the laughter. I remember how quickly fear dissolved once people understood what they were looking at. And I remember how odd it felt to realize that something completely normal in my life could look so alarming to someone else. That's the thing I keep coming back to. What becomes routine for us can look shocking from the outside, and what looks dramatic from the outside may just be another Tuesday for the person living it. Before I end this rambling, I keep circling back to that waiting room and that stupidly theatrical backpack. Not because it was some life-changing event, but because it captured something true. Living with sarcoidosis means your ordinary can look suspicious, confusing, or impossible to people who have never had to live this way. And sometimes the gentlest thing you can do for yourself is stop expecting your reality to look normal to everyone else. 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. Sarcoidosis 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.