When Chronic Illness Changes Who I Thought I Was

In this episode, I’m talking about the grief of missing who I used to be before chronic illness changed my body, my confidence, and the way I moved through life. I’m reflecting on identity, acceptance, and the quiet habit of measuring today’s body against yesterday’s freedom. Through a memory from Sedona, Arizona, I revisit a moment when I had to face what I’d lost, what I was still carrying, and how hard it can be to care for the person who remains.

This podcast is narrated using an AI voice. The words, reflections, and lived experience are my own.

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I'm sharing my personal experience here, not medical advice. Please don't diagnose yourself, change medication, adjust oxygen, start a treatment, stop a treatment, change your diet, or make any medical decision because I told a story and sounded unusually composed. For anything involving your actual body, please talk to your own doctor or a qualified medical professional, preferably someone with a license and not just a podcast app. You're hearing this in an AI voice because I choose to use one. My own voice gets tired easily, and after a while it starts sounding like a screen door arguing with a gravel driveway. The writing, memories, perspective, and lived experience are mine. The smoother voice just helps keep the episode accessible, consistent, and easier to listen to. The red dirt was warm under my fingers, almost too warm, and I was crouched in the Arizona sun with a small rock in my hand, staring at it like it had just told me something I wasn't ready to hear. Hello, and welcome to A Body Rebels, a chronic illness podcast. I'm Tate. Today I want to talk about grieving the person I used to be before chronic illness changed the shape of my life. Nobody really prepares you for the identity part. People talk about symptoms. They talk about medications, scans, surgeries, side effects, insurance, and the paperwork that seems to breed quietly in folders when no one is watching. They'll talk about fatigue too if they're feeling generous. But they don't usually say that illness can make you feel like you've been dropped into your own life with the instructions missing. That part caught me off guard. I knew illness could change what my body could do. That seemed obvious enough. What I didn't understand was how far the change would reach. It reached into my routines, my confidence, my sense of the future. It reached into small, ordinary decisions like whether I could stand long enough to finish a task, whether a staircase was mildly annoying or personally offensive, and whether leaving the house required more planning than a small expedition. Even the mirror got involved. I could look at my face and know it was mine, but not always recognize the life behind it. The memories were mine, the sarcasm survived, thankfully. But underneath, I felt edited, revised, like a newer version of me had been printed, and nobody had bothered to include the updated pages. I remember the day before my first defibrillator was implanted. Some days blur, but that one didn't. I knew I was standing between a before and an after, trying to act as though I understood what was happening. I didn't. I knew there would be new rules, new precautions, new vocabulary, new ways to think about my body. I knew fear was coming. I knew adjustment was coming. I also knew I hated the whole arrangement immediately, which still seems fair. And yes, some of what I feared became true. My life changed. I gave things up. I reworked parts of myself around medical reality. I developed a complicated relationship with the phrase, take it easy, which can still annoy me faster than it probably should. Easy, according to whom? A doctor, a physical therapist, someone whose heart has never decided to become theatrical? Someone whose lungs have never acted like they needed their own agent. Take it easy sounds gentle until you've heard it too many times from people who get to leave the appointment and return to a body they don't have to negotiate with all day. Still, I adapted. I had to. From a distance, adaptation can sound noble. Up close, it's mostly logistics. You act casual while your brain quietly calculates stamina, pain, recovery, rest, and the distance to the next chair. I figured out how to do that. What I didn't do, not for a long time, was grieve the old me in a way that let him rest. I missed him. I missed the version of me who moved through the world without constant background math. I missed the ease. I missed the body that felt more like an ally than a suspicious coworker. I missed being spontaneous. I missed assuming next month would probably look enough like this month that I could make plans without checking for exits in my head. That kind of grief can live quietly for years. Sometimes it shows up as irritation. Sometimes it shows up when you watch someone do something ordinary without effort, and a quick private sting passes through you. Sometimes it shows up when you compare who you are now with who you were then, and the comparison is cruel before the thought is even finished forming. The old self becomes the standard. The current self becomes the person failing a test he was never meant to take. For one of my birthdays, my wife and I went to Sedona, Arizona. Sedona looks fake until you're standing in it. The red rocks are too vivid. The sky feels too wide. The air is dry and clean, and the quiet feels full, like the land has been paying attention for a very long time. I did not arrive there and become a desert mystic with excellent cheekbones and a linen shirt. Let's stay reasonable. I was still me. Same body, same medical history, same limits, same blend of gratitude, irritation, and inappropriate humor. But Sedona slowed me down. It made me listen differently. At one point, we came across a Buddhist stupa. It was quiet there. My wife wandered off to look around, and I had a little time by myself. Just me, the sun, the red earth, and my own thoughts. A risky little gathering. I bent down and picked up a small red rock. It was warm in my palm, and almost immediately I knew what it was. I know how that sounds. I'm not launching a mystical rock-based lifestyle brand. There's no subscription box, no desert wisdom starter kit, no limited edition healing gravel. But in that moment, the rock had a meaning I didn't have to force. It was my old life. It was me before heart failure, before pulmonary hypertension, and then the strange shock of being told it had reversed. I still don't quite know where to put that fact. Before sarcoidosis and everything that followed, before fear became practical, before survival became part of the daily routine. It was the version of me who made plans with a different kind of confidence. The version who didn't yet know how fast a life can split in two. Standing there with that rock in my hand, I felt tenderness for it. That surprised me. Grief isn't always tender, sometimes it's angry, sometimes it's bitter, sometimes it's resentment wearing a reasonable expression. But what I felt in that moment was gratitude. I thanked that old version of me. I thanked him for the strength he had before he knew how badly he'd need it. I thanked him for carrying me as far as he could. I thanked him for the joy, the confidence, the mistakes, the energy, the ordinary assumptions, the optimism, and the life he got to live before everything changed. Then I knew I had to let him go. Not because he failed me. Not because I wanted to erase him. Because that chapter was finished. I'd been acting as if he might come back if I waited long enough. I was still carrying pieces of him around, comparing, bargaining, wishing, trying to recover a life that wasn't returning in the shape I remembered. So I dug a small hole in the red dirt and buried the rock. Gently. I didn't throw it away, I didn't bury it in anger. I wasn't rejecting the old me. I was honoring him. Discarding something and laying it down with care are not the same thing. And then when I scooped out the dirt, another rock came up. A second small rock. You can call that coincidence, and I won't argue. I'm not recruiting anyone into desert symbolism monthly. But I was there. I know how it felt. It felt like an answer arriving quietly. I picked up the second rock, and I knew what that one was too. That one was me now. Not a better me. Chronic illness doesn't hand out upgrades because you've suffered enough. I didn't become wise and calm and radiant. I did not develop a peaceful glow, which feels rude considering the paperwork alone. I became someone changed by necessity. This version of me has scars, limits, gratitude, grief, less patience for nonsense, a darker sense of humor, probably, a deeper appreciation for rest, for love, for small pleasures that don't ask too much from the body. I decided that second rock was the life I have now. And I placed it on a small rise where it could stay in the sun. I wanted it visible, warm, unhidden. I didn't want the current life buried while the old life stayed clutched to my chest as proof of who I really was. The life I have now is real. It deserves daylight. It deserves care. It deserves affection without apology. For a moment, I stopped measuring. The fantasy went quiet. The one where someday your old life gets handed back to you like a coat someone found in a closet. The one where your body returns to its earlier setting, and you walk back into the person you were before the diagnoses. Before the fear, before the devices, before the losses. I wasn't getting that version back. But I wasn't gone either. I was still here. Changed, yes. Marked by what happened, absolutely. Annoyed on a regular basis, of course. But still here, still me. Not a leftover, not a downgrade, not a damaged copy. Me. And once I saw that, I had to admit how cruel I'd been to the current version of myself. Every time I treated him like a poor substitute for the original, I was asking someone who had survived a lot to keep apologizing for surviving differently than planned. People get nervous around acceptance because they think it means defeat, but I don't see it that way. Acceptance is not pretending the losses don't hurt. It's not smiling politely through things that are awful. It's not wrapping grief in inspirational packaging and calling it healed. Acceptance is much plainer. It's saying, This is the body I have. This is the life I have. This grief is real. These limits are real. This love is real too. Now how do I live here? That question changed where I put my attention. Comparison only keeps score. Living asks for something more useful. What helps? What drains me? What pace I can hold? What joy still fits inside this life? What tenderness I've been withholding from myself? What parts of the day can still be good, even if the whole day is complicated. Comparing yourself to even your old self is the kind of harm you do to your own spirit. When you decide that who you are is somehow less valuable than who you used to be, your ego starts believing you need to fix or change your true self, even though the universe already created you as you are. And no, I didn't stop grieving after Sedona. I'm not selling magic rocks. Grief comes back. It can appear in a pharmacy line, in the canceled plan, in a staircase on a bad lung day, in a memory of doing something easily that now requires planning, recovery, and a silent pep talk in the car. Loss doesn't evaporate because you had a meaningful moment in the desert. But that moment gave me a place to stand. It helped me understand that I could miss who I was without abandoning who I am. Because if all my love is pointed backward, the current me goes hungry. And he needs care too. He needs humor, he needs rest. He needs food that tastes good. He needs quiet mornings. He needs the right to exist without constantly auditioning for the role of his former self. If you're listening to this while grieving the person you used to be, I get it. It's alright to miss that version of yourself. It's alright to be angry. It's alright to be tired of adjusting. It's alright to resent how much chronic illness takes. I'm not here to hand you a polished slogan and call it comfort. Some losses stay tender. But I don't want to spend the rest of my life standing guard over the past while the person I am now waits outside, wondering when I'm going to look in his direction. I'm still somebody. Even if that future looks nothing like the one I expected. After 20 years with sarcoidosis, I've had to stop treating my old life like the only real one. I've had to look at the life in my hands now, with its scars and limits and stubborn little joys, and decide not to bury it. That's what I was doing in Sedona. I wasn't burying my worth. I was bearing the demand that I become who I used to be before I could love who I am now. And what I felt afterward wasn't perfect peace. It had dust on it. It knew the cost. It let me stand in the sun for a minute without arguing with my own life. I'm Tate, and this is Abody Rebels, a chronic illness podcast. Thanks for being here. You're welcome to visit AbodyRebels.com, where you can leave a review, send me a message, or leave a voicemail for the show. Please know I'm not able to respond to solicitations, sales offers, guest pitches, or promotional outreach. 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 follow the show, share it, and leave a review on Apple Podcasts. New episodes drop every Tuesday and Friday. So until next time, stay safe, be happy, and most of all, keep breathing and remember, sarcoidosis is only rare until you're the one living with it.