Healing Our Kindred Spirits

The Reality of Chronic Pain and Illness—And the Unexpected Lessons Along the Way

• Donna Gaudette • Season 1 • Episode 16

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A deeply personal reflection on what chronic illness and pain have taken—from physical abilities to long-held dreams—and the resilience, insight, and quiet strength that have emerged in their place.

 

In this intimate episode of Healing Our Kindred Spirits, Donna shares the honest, unfiltered reality of living with chronic illness and chronic pain—not just the symptoms, but the social, emotional, and spiritual toll they take. From missed moments with loved ones to being dismisses, she speaks candidly about what these conditions have cost her… and also, what they’ve unexpectedly taught her.

 

This episode is for anyone who’s ever felt unseen in their pain, unheard in their doctor’s office, or uncertain of who they are in the midst of their health journey. Through raw storytelling and gentle reflection, Donna invites you to feel less alone—and maybe even a little more empowered.

 

If you’ve lost something to illness or pain, this episode might help you find something, too.

 


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The views and opinions expressed in this podcast are for informational and entertainment purposes only and do not constitute professional advice. Listener discretion is advised and we encourage you to seek appropriate guidance for your individual circumstances. The hosts and guests are sharing personal experiences and perspectives which may not reflect those of our listeners. Thank you for joining us on this journey. Hi kindred spirits, and welcome back to another episode of Healing Our Kindred Spirits. I'm Donna Gaudet and I'm so grateful you're here with me today.

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This episode is deeply personal because it's about the very body I live in, the one I wake up with each morning, the one I navigate the world in on the good days, the hard days and all the days in between. Today we're talking about chronic illnesses and chronic pain, chronic health conditions, but not in clinical terms, not as statistics or textbook symptoms. We're talking about it as a lived experience, as the quiet truths we carry inside our skin, bones, our hearts. This isn't a medical lecture, it's a conversation, it's a story, an experience. It's my story and maybe in some ways it's yours too. So if you're listening while curled up in bed or pacing just to find some relief, if you're on your way to yet another appointment or simply trying to hold yourself together long enough to get through the day. Please know this you are not alone.

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Living in a body that aches, flares or simply won't cooperate is exhausting, not just physically, but emotionally, spiritually and socially. It wears on your identity, it tests your patience, it can unravel the sense of who you are and, maybe the hardest of all, can leave you feeling maybe a little invisible, even to the people who love you the most. I know that space well, the space where silence feels safer than trying to explain. The space where you begin to doubt your own instincts because someone in a white coat tells you it's probably nothing. The space where nights feel endless and hope feels small. But even in all of that, I've also discovered something quietly powerful. I've found strength in reclaiming my voice. I've learned to ask for help even when it's hard, and I've come to understand that telling the truth, your truth, is one of the most courageous things you can do. So if you've ever felt unseen or unheard seen or unheard, I see you. If you've ever felt broken, you are not. And if you've ever wondered whether your story matters, please hear me, it does. This space was created for you, this episode is for you, and we'll walk through it together. So, before we begin, I invite you to take a deep breath with me. Inhale slowly, feel your body where it is, exhale softly, let your shoulders drop, your jaw loosen and your heart settle just a little. You don't need to hold anything right now. You're safe here. You're heard here. Let's begin.

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I want to start this episode with something that's really important to me, a dedication to all of you out there who are doing your very best to live through chronic pain, chronic illnesses, chronic health conditions, not just surviving, but somehow still try to find meaning in the middle of it. To the ones who wake up each day not knowing what kind of body they'll be living in or what kind of battle they'll be up against. You're the real warriors, and I see you. I hope this episode reaches who needs it most. Maybe you're listening from your bed right now, or you've paused your day to catch your breath. Maybe no one around you fully gets what you're listening from your bed right now, or you've paused your day to catch your breath. Maybe no one around you fully gets what you're carrying, but I want you to know with all my heart that you are not alone in this. Living with chronic pain is like trying to go about your life while dragging something heavy behind you and no one else can see it, and some days maybe that weight feels manageable and other days it's like you're hauling a shipper.

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When I first started putting this podcast episode together, I thought I'd take a more informative approach, share some facts, maybe sprinkle in a few personal stories. But the more I wrote, the more I realized this isn't just a topic to talk about. This is my life and I can't talk about chronic illness and chronic health conditions without opening the door to what I've lived through and still living through every day. Now. That makes me very uncomfortable. To be that open and that transparent, I am opening myself up to judgment and criticism, especially when this is going to be wherever it's going to be, and not everybody understands. And I think, no matter how long we do this, we always feel that we're going to be judged. And, to be honest, I almost decided to pull the plug on the entire topic altogether, but my intuition told me that I needed to do this. I kept going back to it. It kept gnawing at me, and gnawing at me because so many people are suffering and so many people are just looking to feel connected to others who quote, get it unquote. So I'm going to do something that feels a little vulnerable. I'm going to share pieces of my experiences, my story messy, complicated, painful pieces and the hope that it resonates with someone out there who has been carrying their own invisible weight of illness or chronic pain in silence. And if something in this episode feels like your story too, I would truly love to hear from you. I'll include ways to reach out at the end, because I believe in the power of shared experience, and healing happens when we stop pretending we're fine and start telling the truth.

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My own truth started back in 2011. That's when the pain started to show up regularly. But in 2017, everything changed and I may have mentioned this in a prior podcast, maybe touched on it a little bit, but that year I had kidney stones, and if you've ever had battled kidney stones, you know the pain involved with dealing with them. When you know, you know I was scheduled for a common procedure called lithotripsy, which breaks up the stones using targeted sound waves or lasers, and I had a stent placed to help everything pass through easily. Routine, they said. But when the time came, a few weeks later, and the surgeon's office to remove the stent. They couldn't. It had calcified, so they scheduled me for surgery.

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I wasn't feeling right when that day came. It was going to be in two days. I told the doctor I had symptoms of a possible infection. Even when I went for pre-admission the next day at the hospital I asked if a urinalysis had been ordered because something felt off in my body. I even followed up with the nurse just to be sure, but I was told the surgeon did not require one. I even asked her to follow up with the doctor's office while I was there to make sure it wasn't a miscommunication. And here's the part I still think about.

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My instincts were screaming at me that morning of the procedure. I felt awful. I was weak, I felt foggy. Something in me kept saying don't go through with this, cancel the procedure. I didn't want to be difficult, I didn't want to cause a problem, didn't want to inconvenience anyone, and I wasn't sure if it was fear or true inner guidance. Was it coming to me or from me? Where was the fear coming from? And I second guessed myself have you ever done? This Sound familiar. So I went through with it. I gave the medical team all the information they needed, told them I had DISH, which makes intubation tricky because bone spurs can press on my earway. I had to remind them that I do have a difficult earway and that's been documented. And I also warned them that I felt sick. I voiced my concerns. They reassured me I'd be giving antibiotics and everything would go smoothly.

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But during the surgery things did not go smoothly. Of course I don't know what happened during the surgery. This is from the notes I gathered from my medical record, as well as what the anesthesiologist told me before I went into septic shock and recovery. At first they tried light sedation, but when the surgeon struggled to break the calcification with the laser lithotriptor and the anesthesiologist raised concerns because I guess my vital signs, all of that was really going a little crazy and they had to intubate me and put me into general anesthesia because it was taking longer than what regular light sedation would require. Apparently, during this time he had nicked the ureter and the infection was set off in my body. All of that bacteria was invading my organs, my muscles. It was just taking over my body.

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When I woke up in recovery I was freezing, which is not uncommon after surgery. Because of all the meds that they give you. I was freezing, I was shivering, trembling and I asked if the stent had been removed. That's when everything spiraled. My body started convulsing, monitors were going off. I don't remember much after that, just pieces.

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I know now from my medical reports that I was in full-blown septic shock. They rushed me to the ICU my husband had to sign papers for them to put in a central line on my neck with four ports. They pumped me full of broad spectrum antibiotics while they tried to identify what kind of infections I had and unfortunately the process could take days for the lab to identify which bacteria they are dealing with. And, as it turned out, there were two different types of bacteria in my bloodstream too. And I was told later that if I had gone home that day, if I had managed to be okay enough to leave and this happened on the way home I might not have survived the trip. That scared me. I don't remember much of the ICU days, but I know my husband never left my side. I know my fever spiked to 104. And I know from what I read and what my husband told me. They packed me in ice, they soaked towels in cold water and blasted me with fans to bring my temperature down. And somewhere in that haze I remember seeing my mom and dad standing there beside my bed and they had both passed years earlier.

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Eventually I was moved to a step-down unit, but the damage was done. I tried to stand and felt like I was trapped in a dream where your legs won't move. I couldn't eat, I couldn't swallow anything. My throat was so swollen. They're ready to put in a nutrition, a tube to put in nutrition for me. But I was able to manage to keep something down and they were okay with that. But trying to move that resistance in my legs, it never went away. Even now my legs still feel like I'm walking through water. If you've ever tried to walk in an active ocean, a current or even a pool, that resistance causes so much fatigue.

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And here's the thing no one really explained to me how serious it had been. No one talked about the long-term effects of sepsis or what it could mean for the rest of my life. I was exhausted, scared, completely wrung out, and I still had to go back for another procedure. The stent had broken and they had put another one in its place, so I had one and a half stents still in there that needed to come out, which meant I needed to go back a third time for them to get them out.

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The anxiety that came with that next surgery. I had to wait a month because of everything that happened and I don't even have words for it. I was terrified. I prayed the whole way to the hospital. Now, archangel Michael has always been the one I call on when I feel unsafe or when I'm looking for guidance or I'm looking for healing, and I prayed to him like my life depended on it, because in my mind it did. And something happened that day in the hospital while I was in the outpatient area waiting for my surgery. Something unexplainable, something very spiritual. And if my husband had not been there and experienced it as well, I surely would have thought that I imagined the whole thing.

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And I don't want to give you a little tidbit. Then walk away from it, but I'll be sharing that story on an upcoming episode because it deserves its own space, because it is so powerful. But let me just say Michael did not let me down. I made sure that I reiterated my fears to the surgical team and to the doctor, and at that point I didn't even trust the doctor, but I knew that I just had to go through with it. And the surgical team assured me that they had reviewed what happened last time and they I'm not saying they could guarantee it wouldn't happen again, but they were taking every precaution to make sure that didn't happen again and they had purposely scheduled me for the last slot of the day just in case they ran into complications.

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But the surgery went well. Both stents were removed, I went home with antibiotics and, for the first time in what felt like forever, without foreign hardware in my body. But all of these things that happened over the three or four months. I was changed, and not just physically. If you can imagine having lithotripsy, which is thousands of rounds of shock waves sent to a targeted area, and multiply that by having this done twice as well as having it done with a laser lithotriptor, that's over 6,000 to 8,000 rounds of shock waves being pinpointed to my kidney. And that's only if they're accurate. And I recently found out through imaging that I have a small tumor in my adrenal gland and your adrenal glands to the top of your kidney, in my adrenal gland and your adrenal glands to the top of your kidney, and they are confident that it is benign. But as someone who has had cancer, I don't take that lightly.

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But the side effects of everything that I went through and I didn't know there was a name for it I didn't know until a few years ago because doctors couldn't explain anything to me. They couldn't tell me what was wrong because I didn't fit into a box. And I recently learned that there is a thing called post-sepsis syndrome and it's kind of like a catch-all. When you have sepsis your body just goes through so many changes and so many irreversible things, and once the damage is done, a lot of times it cannot be undone, and so a lot of what I've been going through the last several years is related to going into septic shock, and with that I could no longer walk like I used to. My movement was limited, especially my hips and my shoulders. I couldn't sleep on my stomach any longer. I couldn't move my hip out. I couldn't even get through 15 minutes of physical therapy without feeling like I'd run a marathon, and I would sleep for hours after each session. I tried water therapy, which was great while I was in the pool, but trying to get out of the pool and out of my swimwear it exhausted me At the time of all of this happening, I was working as a massage therapy program director and instructor.

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I loved my job, loved it. It was one of the best jobs I've ever had. With the brain fog, the fatigue, the physical limitations, I just couldn't do it anymore. And after three months on medical leave and I wasn't really improving physically, they needed me back. But I wasn't ready physically or mentally. So I had to let that job go and I reluctantly applied for SSDI, which is social security, disability insurance. I felt crushed and I felt defeated. I had worked since I was 13 years old. I really never not worked, except when my kids were little. But not working was foreign to me, it just didn't sit right with me, it didn't seem real. But getting approved for disability and if you've been through the process you know it can take forever and it took me 13 months and that's considered fast, but it was 13 months of no income, of going from a two income household to a one income household.

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I still struggle with fatigue, the joint pain, bone pain and I live in a body that no longer feels like my own and I was later told by a doctor that my imaging looked like that of someone in their 80s and I was only in my 50s and I had already been diagnosed with fibromyalgia, myofascial pain syndrome and osteoarthritis before the sepsis. But everything got worse afterwards. I started having palpitations, arrhythmias, my inflammation markers kept climbing. For an example, the C-reactive protein test which measures inflammation in your body Normal, I think, is up to six. I started out with maybe six and 12. After I had sepsis it started to climb steadily 14, 18, 22, 28. And I believe now it's at 34, but I still can't get answers as to why. And I believe now it's at 34, but I still can't get answers as to why. And the only thing is because my body, it's constantly fighting itself. I kept asking for answers but no one really had them. I wasn't textbook, they said.

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I tried steroid injections in my knees, my hips, my shoulders and the side effects from the steroid injections were horrendous for me. But I got them for years to have some relief. My blood sugar spiked, my blood pressure spiked. I'd end up at the ER with heart palpitations. But I was just trying to get some relief and I did for about two or three weeks at a time and then I had to wait another four months to be able to have them again.

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Eventually I found out that I had DISH. Now DISH is an acronym for Diffused Idiopathic Skeletal Hyperostosis, also known as Forrester's disease. I found it on my own in my electronic health records. No one ever told me and the frustrating part it's listed as a rare disease that allegedly doesn't cause pain. But thousands of us living with it really beg to differ and I believe now it's starting to be studied more widely by the Arthritis Foundation, which is good for all of us who suffer with it. Maybe that's happened to you too. Maybe you've had to play detective with your own health, digging through records, researching symptoms, finding more questions than answers.

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It's exhausting, and I also struggle with what I said about post-sepsis syndrome. It's kind of like a catch-all because they can't figure out what else is wrong, and, of course, medical PTSD because of what happened and anytime I need to go for a procedure or any kind of testing, anytime the idea of going to the hospital comes up. I really fall into this deep, scared, anxiety-ridden feeling, and the part that I'm dealing with now is that I need to go and have another surgery. I have a very large kidney stone in my right kidney and they can't blast it. They can't do it the way they did before because it's too big, and so I have to go to Boston to have an operation called percutaneous nephrolithiotomy and it sounds scary. It sounds scary and it's scary for me, especially when you deal with medical PTSD. And I have been putting it off and I know I need to get it done and I'm hoping by the end of the summer I'll have enough courage to do it. I've already met with a surgeon. I already met with the anesthesiology team. I'm just scared. I'm just scared because I don't want to end up worse than what I am now and that's what terrifies me. That's what terrifies me. And PTSD, whichever way you have it, whether medical or anything else, it's a real thing and it's not talked about nearly enough and I'm grateful, grateful for finding helpful forums on social media that have been a source of great information and support over the years.

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These are just some of the invisible illnesses that people live with every day. Some like fibromyalgia, osteoarthritis they're familiar names but others POTS, posterior Orthostatic Tachycardia Syndrome, ehlers-danlos Syndrome, endometriosis, orthostatic tachycardia syndrome, ehlers-danlos syndrome, endometriosis the hundreds of autoimmune diseases, chronic migraines, headaches, various forms of cancer, mast cell activation syndrome, lupus, ms there's hundreds of them. They all remain in the shadows, misunderstood, misdiagnosed and dismissed. You won't always see a cane or a cast or a wheelchair, but that doesn't mean the struggle isn't real. And for many of us the worst part isn't even the pain. It's being dismissed, being told you're exaggerating, being left to figure it out on your own. Did you know that in the US alone, over 51 million adults live with chronic pain and nearly 20 million live with high impact pain? That means it interferes with their daily living, every single day.

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But numbers don't tell the whole story, because pain doesn't just live in your body. It lives in your relationships, your plans, your dreams. It changes how people see you or how they stop seeing you altogether. And far too often we're left navigating that storm without a map which you're here, I'm here, and if nothing else, this space, this episode is a place where we don't have to pretend anymore. Let's keep it going. Let's talk about what it really means to live with invisible illnesses and what healing looks like, even when it's not linear. Living with an invisible illness means constantly calculating, recalculating every single action, every tiny decision. It gets measured against an internal energy meter that no one can see.

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For those of us with fibromyalgia, the day starts with what we call spoon counting. If you know, you know. But if you're new to that term, the spoon theory is a way to explain what it's like to live with limited energy. But if you're new to that term, the spoon theory is a way to explain what it's like to live with limited energy. Think of your energy as a handful of spoons. You might start your day with 10. Brushing your teeth? That's one. Shower, maybe two. Cooking a meal, folding laundry, making that doctor's appointment Each task takes a spoon, and when you're out, you're out. Borrowing from tomorrow means you'll pay for it with pain, fatigue or a flare-up that knocks you off your feet for days. For me, if I have to leave the house for something, anything, it's production. I can't schedule more than two things in one week, and I need full recovery days in between. That's just how life looks now. It's my normal and maybe that's yours too.

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For someone with MS, the morning might start out feeling okay, only to be hit by muscle weakness, vision issues or maybe cognitive fog by mid-afternoon. Those with POTS often can't stay standing for too long without needing to lie flat just to stabilize their heart, and people with mast cell activation syndrome might have a reaction, sometimes to something as simple as a fragrance, a temperature shift or even a certain food, and it sends their body into a tailspin. So how do we cope? Let me share a few of the things that have become my lifelines over the years. Maybe they'll resonate with you and maybe they can help you.

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The first one is pacing. It's not about giving up, it's about honoring what's possible without crashing. You learn to rest before you hit the wall. Using second one using tools unapologetically. Whether it's a cane, braces, ergonomic chairs, heating pads, tinted glasses, a walker, it doesn't matter. These aren't accessories, they're essentials. They're what helps us function. Third rest rituals For me it might be lying on a heating pad midday, stretching gently, or just sitting quietly with a soft meditation. Even 10 minutes could help me feel more grounded.

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Number four simplified meals and gentle nutrition. Some days I can cook and there are other days whatever I can manage, and that's okay. There are some days I might start out with a great plan and my husband has to take over, or we end up ordering takeout. And I don't know about you, but I know with me when my pain level is up, I don't feel like eating, or when I'm stressed, I don't feel like eating, so we always keep things on hand like soup, things for sandwiches, something simple and number. Let's see one, two, three, four, number five community.

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This one is everything. I've found amazing groups on Facebook, from people living with chronic conditions to caregivers and TBI survivors. Reading their stories, seeing their honesty, it reminds me I'm not the only one struggling. It doesn't take my pain away, but it helps me hold it with a little more perspective. We see each other and there's deep healing in that. No judgment. The next one creative outlets. Journaling. Writing has always been my salvation. Telling stories like this one, making art, doing crafts, reading, listening to music all of these have become soul medicine for me.

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Next one symptom tracking. I've found apps that help log flare-ups, triggers, meds and even moods. It helps me advocate for myself when I see patterns my doctor might miss. I have an app that tracks all of our medication. We check it off when we take it, so we know that we took it At the time that we took it. Everything is logged, so I know I don't double take something.

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Next one therapy. Honest to goodness, sit with your feelings. Therapy. In 2017, when everything began spiraling for me, I found a therapist. I've had therapy off and on throughout my adult life, but this time I stuck with it because I needed to. I was losing myself. I lost everything that I valued my job, the people that I worked with, my sense of identity, a career that I loved, my health. And I needed someone who wasn't in my daily life to help me find my way again. Someone objective, someone who could hold space for the parts that I couldn't even name yet. And if you've tried therapy and didn't find the right fit a name yet, and if you've tried therapy and didn't find the right fit, try again. Keep going until you find someone who gets you.

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There is no shame in needing mental health support. In fact, for me it's been life-saving. And there's another coping skill that I think deserves a little more airtime, and that's grace Giving yourself permission to cancel, to rest, to cry, to say I can't today. I can't today. That's not weakness, that's wisdom. Now I'll be the first to admit I'm not always good at that, not at all.

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When family comes over, I still try to look normal. I love to cook. I push through the pain. No one's expecting it of me, but I want to do it. I try to walk straighter. I try not to use my mobility aids. I try to smile more because I don't want to be pitied. I don't want sympathy, I want to be present. I want to enjoy my time with them. But it's not easy pretending everything is fine when your body is screaming. And, if I'm being honest, I fear that they will think they are being a bother and not come around to see us, and that would really hurt us more than anything. But even with medication, chronic pain it's still there. Sometimes it's quiet, but it's constant. It's like a low hum beneath everything.

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I want to share an experience with you about something that happened just last week. It was one of those moments that starts out small and somehow cracks you wide open. It was a cool breezy morning here in New England, one of those weird days that invites you outside. I wanted to clean off the deck, get the furniture set up, just enjoy that little patch of space. That feels like freedom when you're housebound most of the time. There are weeks that I don't leave the house and I love to sit on my deck.

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I had a plan. I always do because I have to. My most productive hours are between 11 and 2. After that I drop off hard. So I mapped it out on my head, cleaned the chairs, sprayed down the planters, washed off the decking. I knew how many spoons it would take.

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And then I got to the garden hose. Simple task, right. It's a garden hose, a garden hose. My husband had replaced the hose and added a new spray nozzle. I turned the faucet on and nothing happened. I'm standing there with this new fangled nozzle in my hand looking for the trigger and I can't figure it out. My mind went totally blank. There's no handle, no lever, just this plastic thing attached to the hose.

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And I froze, not because of the hose, not because of the nozzle. It's because in that moment I genuinely thought am I losing my mind? I couldn't believe that something so small, so ordinary could undo me. But it did. I stood there alone on the deck and just unraveled. I am not the type to get angry or to give into frustration easily, but this situation was my undoing.

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I started crying, quiet at first, and then that kind of deep, full-body sob where everything you've been holding in just pours out. I wasn't just crying about the hose. I was crying about needing help for things I used to do on my own. I was crying about not recognizing myself anymore. I was grieving all over again for my independence, over again for my independence, and in that moment I felt so foolish. But it wasn't about the nozzle, it was everything, all of it. It just came bubbling up and spilled out onto the deck with the garden hose. My husband heard the screen door slam and called out from the bedroom, worried I'd fallen. He came outside and asked if I was okay and I just said tears streaming down my face to fine, okay. He looked at the nozzle, picked it up and flipped this tiny little plastic tab on top. Apparently that's how they work. Now, who knew? I stood there completely wiped out, not because I didn't know how to use a freaking garden hose, but because I just had an emotional avalanche and that stupid nozzle had been the final push. And by then I was completely out of spoons and I had to lie down.

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Here's the thing. My husband gets it, not just because he's compassionate and an immense person who supports me and a caregiver for me, but because he's been walking his own chronic pain journey many years, but since 2021. A workplace accident left him with multiple injuries and broken bones that never healed properly, including a traumatic brain injury and two heart attacks. He has cognitive struggles now, short-term memory challenges, pain, fatigue and a lot of days that are just really hard. He can't do many of the things he used to do, and neither can I. So we navigate this new normal together and thankfully we like each other because we're together 24-7 and have been since August 2021. We've been together for almost 30 years, but 24-7 since August 2021. But what we've learned through all of this is that sometimes the best support isn't someone fixing things for you. It's someone who just lets you fall apart without judgment. Someone who hears your sobs from the other room and doesn't rush in to make it better, but sits beside you and says I know me too.

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That morning on the deck reminded me of something important A grief doesn't always look like a funeral or a goodbye. Sometimes it looks like a garden hose and a grown woman sitting there, defeated, mourning all the things she used to do, without even thinking. I want to share a quote that I read years ago but didn't fully understand until that morning, and the quote is quote I sat with my anger long enough to know and realize that it was grief. Unquote. I get that now. I really do. Maybe you're struggling with the same thing.

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Grief is many things because, like healing, it's not linear, and when we grieve the loss of something in our life, it doesn't have to be the loss of a person. It can be the loss of our identity, independence, a job relationship or, in most cases, all of the above. So maybe you're listening and you don't have a name for what you're going through yet, or maybe you've collected so many diagnoses you've lost count. Either way, your experience matters, your story matters. Even if your chapters are written in silence, even if the world doesn't see your pain, you're still here, you're still writing, and that is no small thing. You are not alone. Many of us shared experiences in living this human experience, and that's what makes us kindred spirits.

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So what is the cost of a delirium diagnosis and being dismissed? Have you ever had to convince someone that your pain was real? I'm raising my hand, have you been told, but you don't look sick, or passed from doctor to doctor only to hear it's probably just stress or anxiety. Maybe you need to lose some weight. That right. There is what we call medical gaslighting, and yeah, it's real.

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It happens far too often, especially to women, people of color and anyone who doesn't quote fit fit, unquote the neat little check boxes in a medical textbook. My own doctor, who I've seen for many years, once told me you definitely, definitely, you're definitely not a textbook case, and he's right. I don't present in many ways that make diagnosing easy. There are times he and I would sit across from each other, both visibly frustrated, not with each other, but with the limitations of what medicine could tell us. He hasn't given up on me yet, and I hope he doesn't, and I haven't given up on myself. But navigating this kind of uncertainty together, it's exhausting for everyone. Maybe you're in that place too, where your doctor is trying and you're trying and the answers just aren't coming. You do your own research, you ask thoughtful questions, you dig into studies and forums, support groups, trying to piece together your puzzle, not because you distrust your doctor, but because you know your body better than anyone else and you know when something is off.

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That 2019 study found that more than half the people with chronic symptoms waited over a year for a diagnosis. Many waited far longer. I was one of them. I've been told to exercise more that it was probably hormones that weight loss would everything. I even had weight loss surgery pushed on me during routine appointments without any discussion about my medical history or personal boundaries. I've made it very clear since then that I will not be having that conversation again, not only because of a deeply personal family history, but because of my own medical PTSD.

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And maybe many people say this. But I'm saying this I don't have an eating problem. I feel like I have a metabolic problem and I'm not closed to health. I want to feel better. I want my body to feel better, to look better, I want to be healthier. But I also want answers. But I want those answers to come from a place of respect, from my individual journey, not from a checklist and a manual. I'm not a case file. I'm a person, and so are you, and it is a special kind of grief to know in your soul that something is wrong and to be told or made to feel that it's all in your head because the dots connected from testing don't make sense. That kind of dismissal chips away at your spirit, it makes you question your reality, it makes you doubt your strength and still you keep going. That's the part that people don't see the persistence, the hope, the sheer will to get up and try again. And I want to talk about something. I'm going to really put myself out there now and be really vulnerable and I want to talk about something that's really hard to say out loud absolutely needs to be said.

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Weight bias is real in the healthcare field. If you live in a larger body, like I do, chances are you've had at least one doctor's appointment where your symptoms were brushed aside, blamed on your weight, before any real questions were asked. Now I'm not talking about my primary care doctor, because he's a great doctor. He would never make me feel inferior about anything and when he does have to bring up any kind of issues related to weight, you can tell he does it with grace and I respect that. And it's not because he's getting down on me for it. He's just concerned because maybe there's something else going on that we need to look at.

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So you go into an appointment because you're exhausted, because your joints hurt, because you're having nerve pain or strange hormonal symptoms, and instead of being met with curiosity or concern, you're handed a pamphlet about dieting, told to exercise more, told to come back when you've lost weight. Meanwhile the actual condition maybe is an autoimmune disorder, a thyroid issue, something related to connective tissue, or even inflammation. You're completely ignored. And that delay? It's not harmless, it's not quote just how the system works. Unquote. It leads to disease progression. It causes irreversible damage. It adds another layer of trauma and mistrust and for many it's the reason they stop seeking care. And, believe me, I have been at that point many times, many, many times. But it's not because we don't want help, it's because we're tired of being shamed instead of supported. I've lived this more than once. One experience stands out so vividly I'll never forget it.

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I had made an appointment with a new orthopedic doctor for lower back issues. It was my first time meeting him, though I'd seen another doctor in that practice before for my niece. My husband came with me, like he often does, just for moral support and to help make sure everything gets heard or I don't miss anything. We sat quietly waiting in the exam room. The doctor walks in, didn't introduce himself, didn't say hello, didn't ask why, what could he do to help me? He just looked at me and said so how long have you been diabetic? What medications are you on? I looked at him stunned. I thought he had the wrong file and I said I'm not diabetic. I don't take any medications. I'm not diabetic. He didn't look up, just stared into the chart and said again, more firmly this time Well, you must be diabetic with a BMI of dot dot, dot. He didn't finish the sentence, he didn't have to. I already knew where he was going and I wanted to cry.

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I wasn't being seen as a human being. I was being reduced to a number, a stereotype, assumed to be unhealthy and undisciplined, based solely on my body. My husband stepped in and said she's not diabetic. Can we please focus on why she's here? But it didn't matter. The doctor never examined me, didn't touch me. It was as if he thought I had cooties. He didn't even come over to me. He stayed near the door, never asked about my pain. He just said well, when you lose a hundred pounds, come back and see me. Until then, there's nothing I can do.

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I left that office feeling hollow, defeated and, to be honest, it wasn't even the first time something like that happened. It was the fourth time I'd been dismissed by an orthopedic spine specialist, four different doctors, all in major medical centers. Not one of them gave me a physical exam, not one of them asked me real questions. I wasn't seen as a person. I was seen as a problem, a waste of their time. One doctor actually said if you're not a candidate for surgery, I'm not interested. You're wasting my time. Then he walked out that appointment. It took me seven months to get and that day happened to be my birthday as well. Happy birthday to me.

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It's not just the physical pain that crushes you in moments like these. It's the emotional toll of feeling unworthy of help, of being seen as a walking diagnosis instead of a whole, complex, worthy human being. I understand there are risks with surgery in larger bodies. I get that. That doesn't mean I don't deserve imaging testing or a real evaluation to figure out what's actually wrong. That doesn't mean I should be pushed aside because I don't fit the picture of who deserves medical care.

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Another time I went to an orthopedic specialist for my knees. He walked in, tossed the chart onto the desk and said you're not a candidate for knee replacement. Your BMI is too high. Get it down to the accepted number and call us back. Then he added we can try you on Ozeptic to help take the weight off, but the rest is on you.

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Now here's what that doctor didn't ask me how much pain I'm in every day, what my limitations are, what I'm already doing to try to move my body safely. He didn't know that I used a cane and a walker, that I do chair exercises, that there are days that I don't eat because the pain is too hard, too high, too stressful. That I stretch at the kitchen counter, that I exercise while lying in bed on the days when that's all I can do. That I used to speed walk, that I was once a vibrant, active, licensed massage therapist and instructor, working 50-hour weeks until illness stripped all of that away. He didn't ask, he just assumed, and maybe you know that feeling too.

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Maybe you've told your doctor that you hardly eat because the pain is too intense or the stress takes away your appetite. Maybe you've had labs come back showing signs of malnourishment and still had to sit there while someone suggests stop overeating. Doctors don't realize that maybe, just maybe, you had an eating disorder as a teenager and with them focusing on your weight so much, it's a trigger to what started you on that eating disorder when you were a teenager. So just because you don't mention it doesn't mean it didn't happen. And I say this with everything in me. I truly believe I do not have an overeating issue. My husband has to remind me to eat. I have a metabolic. I do feel I have a metabolic condition. Something went wrong when I went septic shock and my body has not been the same since then, but I'm still waiting for someone to really listen, to really help.

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If this has happened to you, if you've been dismissed, judged or spoken down to because of your size, please know you're not alone and you're not the problem. Here's what research tells us. A 2021 study in obesity reviews found that weight stigma in healthcare leads to increased psychological distress, avoidance of care and poor treatment outcomes. People with higher body weight are significantly less likely to receive preventive screenings, including cancer screenings, because providers focus on weight instead of symptoms, and weight bias disproportionately impacts women, people of color and those with invisible illnesses, creating double or even triple barriers to proper care. Barriers to proper care. And a 2015 survey found that 46% of patients in larger bodies reported being treated with less respect by healthcare professionals simply due to their size. This has happened to me several times when I was reading medical reports.

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When I had imaging done. They would blame the image of not being clear because my body habitus was too large. They would blame the image of not being clear because my body habitus was too large. I don't understand how this can happen. Not everyone is a size 10. So just because your equipment can't image properly, I don't deserve to have a diagnosis or studies done. I obviously fit in the machine with no problem. So why can't your imaging get a clear picture? And, let's be honest when you're in pain, when you're scared, when you're desperately looking for answers, the last thing you need is to be blamed for your own suffering.

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So how do you advocate for yourself when facing weight bias? If this is something you've experienced or are still navigating, I want you to hear this. You deserve respectful, compassionate and thorough care, any size, and here are a few ways you can reclaim your voice. When it feels like it's being ignored, name what's happening. You can say I understand that weight can be a factor, but I'd like to focus on these specific symptoms and what might be causing them. What about redirecting the conversation? You can ask what would the next step be if I were in a smaller body presenting these same symptoms? Bring documentation, journals, test results or written health history. Even sleep or activity logs from a tracker or an app can shift the conversation from judgment to facts and seek out weight inclusive providers. Look for doctors who practice through a health at every size approach. There are growing online directories and support groups that can point you toward providers who will treat you as a whole person, not your BMI, and take up space unapologetically.

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You are not the problem. You are allowed to expect full, competent, compassionate care. If you've ever walked out of a doctor's office feeling ashamed instead of supported, if you've ever hesitated to speak up because the last time you did your weight was the only thing they saw, if you've stopped seeking care, like I've honestly thought about doing myself, because you just couldn't face another round of judgment, please know this your body is worthy of care, your pain is worthy of investigation and you are worthy of being taken seriously, just as you are. So let's change the narrative, let's speak the truth. Let's do that together. And we all know that there's a quiet heartbreak that comes from living in medical limbo.

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Millions of people live with unexplained symptoms pain, fatigue, brain fog, instability, digestive issues you name it Things that disrupt lives completely and yet every test comes back normal. I've been there. Maybe you have too. You know your body's falling apart and yet you're told you're fine. You feel broken, but on paper you're healthy. Let's talk about the facts for a moment.

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That same 2019 study in the Journal of General Internal Medicine found that over 50% of people with ongoing chronic symptoms waited more than a year for a diagnosis Many weeks, several years before they finally have a correct diagnosis. What I mean by this is most times people are diagnosed with fibromyalgia, for example, and then a few years down the road, it's discovered it wasn't fibromyalgia, that it's MS. But you didn't click all the boxes, that you were related to this, but we had to put you somewhere. This has happened to several friends of mine over the years. For many, especially women and people of color, it can take five to 10 years or more, and often dozens of providers, before anyone starts connecting the dots. For people with endometriosis, the average delay in diagnosis is 8 to 10 years. For Ehlers-Danlos Syndrome, the delay can stretch over a decade, even as symptoms, progress and quality of life diminishes.

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And while time ticks by, you lose more than just answers. You lose energy, money, trust, hope, confidence in your own body, sometimes even confidence in yourself. I know it's cliche to say time is precious, but in the world of chronic illness, time lost waiting for a diagnosis isn't just frustrating, it's very traumatic. And meanwhile, I'll be honest there are days maybe you do this too that I watch medical shows. I have a hard time watching them sometimes, but now and then I will watch one and I roll my eyes.

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The patient comes in with a rare condition. The team huddles around a whiteboard, voila, they solved the case in 42 minutes. Wouldn't it be nice if we all had our own 21st century doctor house, someone who could see through the mystery and give us a name, plan, a way forward? I can't tell you how many times I wish that life would imitate art in that way. And then there's that crushing moment.

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You finally get your blood work or imaging back and everything is quote, normal, quote. Don't get me wrong. It's not that you want something to be wrong, but after all this time struggling for answers, it feels like you hit a brick wall. Your body is screaming in pain, but the lab report whispers you're fine and you start questioning everything. Is it in my head? Am I exaggerating? Am I wasting their time? Let me say this as clearly as I can Just because your test results are quote, normal unquote does not mean nothing is wrong. Normal is a setting on a dryer. It's not a measure of your truth. So if you're in that space, if you're holding a stack of clean labs but your body feels like it's falling apart, here are a few things I've learned. Validate your own experience. You are not imagining this. Just because it isn't showing up in blood work doesn't mean it isn't happening.

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Ask for deeper investigation. You can say these results are normal, but I'm still having serious symptoms. Can we explore other possibilities? Not all of us check the boxes. That identifies every symptom of an illness or a condition. Request copies of everything. Use a binder or digital folder. I can't tell you how many times I found important clues hidden in after-visit summaries or buried in test notes. And an important thing is correct inaccuracies. Read those notes carefully. Many electronic systems allow you to flag and correct information so they can review it and and check it accordingly. Make sure you do it, because your records might be read by another provider one day and those small errors can change how you're treated.

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And ask for referrals. If your doctor can't help you, don don't be afraid to say can we consider referral to a rheumatologist, a neurologist, a pain specialist? My doctor is great when I go in and I ask a question or if I say could it be this, could it be that Should I see this doctor, that doctor? He has no problem whatsoever referring me to another doctor, another specialist. He is wonderful that way. But here's a tip I love Ask the nurses who they go to. They always know the doctors who listen, the ones who care and the ones who don't rush you out the door and be honest about the toll it's having on you. You can say to your doctor this is affecting me emotionally as well as physically. I need support. That vulnerability may open the door to new care pathways.

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If you're not honest with your doctor, they can't help you. You can't sugarcoat everything. If you're going in that day and they ask you on your pain scale and you're at a solid nine and you say, oh, I have a two, okay, they're not going to really go too far with you that day. But if you're honest and say what your pain level is, you're not being difficult. You're just being honest.

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And I want to talk about something that rarely gets spoken about without stigma, and that's pain medication. Whether it's a narcotic, a controlled substance, something else, pain medication. We know there's an opioid crisis. We know addiction is real, but at the other end of that pendulum swing is an entire population of people who live with unmanaged pain, not because they want narcotics, but because nothing else touches the suffering. And the shame the judgment from doctors outside your regular care team. And the shame, the judgment from doctors outside your regular care team. It's demoralizing.

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I've experienced it. So has my husband. We're both chronic pain patients because we both have chronic health issues and we share the same primary care physician. He's thorough, he's cautious, he makes sure we're within safe parameters and that we're exploring other options like physical therapy, holistic practices, therapy, meditation, nutrition, everything. He is very thorough. We'll try everything else before going down that route. I know both my husband and I have tried many different medications before. We looked at this type of medication and still we need medical support and we shouldn't be shamed for that.

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So I had that honest conversation with my doctor. I made sure we had a plan. I made sure I was doing everything else I could. Everything was documented. I was doing mental health support, guided meditation, deep breathing, diet changes, energy work all of it because I never wanted to rely on medication alone. But if you're someone who uses pain medication to get through your day, please hear me when I say this you are not weak, you are not broken and you deserve to be treated with compassion, not suspicion. I recently came across an Instagram video that shared statistics on people being denied pain medication after surgeries, during recovery, even during the procedure itself, my heart broke. We're talking about people getting knee replacements and being sent home with Tylenol. I couldn't wrap my head around it. So if you're preparing for any medical procedure, please have those conversations with your care team in advance.

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Don't assume your pain will be managed. You need to advocate for it. If you live with chronic illness or chronic pain, chances are you've been treated like a drug seeker at some point, especially if you had to go to the ER. It's an awful feeling, isn't it? I've gone to emergency rooms for things completely unrelated to my pain conditions and still, once they glance at my medication list, it's like a silent judgment takes place. Their demeanor shifts Suddenly. You're not a person in distress, you're a statistic, a liability.

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And the truth is, nine times out of 10, I refuse pain medication at the ER because I've usually already taken something at home. But the assumption is there? The stigma, the dismissal I'm there for something totally unrelated to my health conditions. Maybe I got a bop on the head. Maybe I'm experiencing some kind of infection going on. I'm not there for pain meds, I'm just there to get testing done. But it's disheartening, it's humiliating and it's a quiet injustice that so many of us have endured in silence. And have you experienced this too? Have you ever gone to the ER and felt like you were being judged before you even opened your mouth? I'd love to hear your story, if you feel safe to share it. Let's keep shining a light on these truths, because our stories deserve to be heard.

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So how do we advocate for ourselves and our loved ones at the doctor's office? The reality is doctors are overwhelmed, they're overbooked, overworked and often have just 10 to 15 minutes with each patient. That's not an excuse, but it is a reality, and it means that your voice, your story, matters more than ever. You may be one of the many patients they see that day, but you are the only expert on what it feels like to live in your body. So what does using your voice look like? This is what I do Document your symptoms, track your pain, your fatigue, your flare-ups.

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Patterns can be powerful. Use clear, functional language. Don't just say I'm in pain, that's just so general, say I can't lift a pan, I can't climb the stairs, I can't stand for more than 10 minutes. Be as specific as you can, because just saying I'm in pain, it's so general and then you're gonna have to hunt and peck, hunt and peck and that's wasting time. And come prepared, I'm really good at this one.

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I open my notes app before every appointment with a list of things I wanna talk about. My doctor actually smiles now when he sees it because it keeps us focused and efficient. Hey, let's read off that list one at a time what's next, what's next? And we're able to get through that in the allotted time that we have for that appointment and bring a support person. Even just having someone in the room with you can help keep you grounded and help you remember what's said. My husband always comes with me for my appointments and I try to make it to all of his. But if I'm having a bad pain day and I can't go to the appointment with him, he conferences me in and I can help him with any questions he may have with a doctor, because it's hard to remember everything and ask questions. What else could this be? Ask, what else could this be? It's such a powerful question.

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And what's our next step is another and trust your gut. If something feels off about your body or about your care, listen to that voice and, if necessary, get a second or third opinion. And maybe most importantly, don't be afraid to speak the truth about what this is doing to you the pain, the exhaustion, the grief, the fear. Your voice is your lifeline. Let me repeat that again your voice is your lifeline. You're not being difficult, you're being brave. And brave doesn't always mean loud or certain, it just means refusing to give up. And if you have a doctor who does listen, like mine does, who meets you in the middle, who works with you like a teammate, hold on to them. That partnership is sacred. And showing up prepared, honest and ready to work together isn't just helpful, it's empowering, because at the end of the day, you're not just advocating for answers, you're advocating for your life.

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So what's the social toll of being sick and I use sick in the general term of dealing with health conditions? Chronic illness doesn't just change your body, it changes your place in the world. It changes your friendships, your family dynamics, your sense of belonging. You start saying no more than you say yes. You cancel plans not because you want to, because your body won't let you follow through, and after a while the invitations slow down, sometimes they even stop altogether, and that's when the loneliness settles in, not because you choose isolation, not because you don't want connection, but because explaining your limits takes energy you don't have, because every time you try to help someone understand, it takes a little peace out of you. So you stop preserving your energy in silence and slowly you fade into the background of a life you once fully participated in. Because the reality is, illness is isolating. But you know what's even more isolating when people stop trying to understand.

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In our case, my husband and I both live with chronic pain and many physical limitations and we've noticed over time that we get overlooked when it comes to family events or outings. And I don't believe it's coming from a place of cruelty or indifference. I really think for many of them it's just easier not to ask. Maybe you don't want us to feel bad for having to decline, or maybe they assume we won't be able to come so they spare us the awkwardness. And truthfully, I do understand that and we hate to cancel or disappoint anyone, but it happens. There are days we can't drive that far, the pain is just too much. When we make a commitment to it, we may be feeling okay that day, but when that day comes it may be a totally different ballgame. But here's the thing it still hurts not to be asked, even if we need to say no. Being included matters. Nobody wants to feel forgotten. It matters because it reminds us that we're still part of something. It says we thought of you, we wanted you there.

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When we see photos afterwards of a family trip to the zoo, birthday party in the park, it brings up this quiet kind of grief, not just for missing the event, but for the version of ourselves who would have been there, who used to be there. We have seven grandchildren ranging from nine months to 18 years old the older ones. We used to do everything with them Sleepovers, day trips, playtime on the floor. We used to do everything with them Sleepovers, day trips, playtime on the floor, walks in the park, tea parties, you name it. We did it, we were present. But with the three youngest ones it's different now and that difference breaks our hearts. We can't get down on the floor to play. We can't make the 30 or 40 minute drive without paying for it with pain. So we watch them grow up in pictures and videos. We wait for visits, hoping the stars align and our bodies cooperate. We understand that they have busy lives and we don't expect the world to stop for us. But if they could really see what it's like to live in these broken bodies, if they knew what it cost us to miss those moments, we wonder, would they come around more? Would they see us not as a burden, but as two people doing the best they can in a life they didn't ask for?

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This is the part of chronic illness that doesn't get talked about enough, the way it quietly rearranges your relationships. You start grieving in ways that don't have a name. You grieve the milestones you missed, the birthdays, the gatherings, the everyday joys of being included. You grieve the version of yourself who could show up physically, socially, emotionally and you wonder if that version of you is gone for good. And maybe you know exactly what I'm talking about. Maybe you've had to smile through the pain when everyone else is laughing around the dinner table. Maybe you've scrolled through social media and saw friends or family making memories you weren't part of and felt that familiar lump rise in your throat.

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Last month, something beautiful happened my daughter, son-in-law and my three oldest grandchildren came to visit from Texas. I hadn't seen them since Christmas of 2022. And that's a long stretch of time when your heart misses people who mean the world to you. We had been looking forward to their visit for so long, not because we had big, elaborate plans, but because just being with them was the thing that mattered most. That's what we craved their presence. Of course they stayed with us while they were here, but they had excursions planned trips to the museum, little day adventures, the beach. Of course they're on vacation. They're not going to stay here in the house. Of course they're going to go out and about, and they were here to explore and enjoy and make memories, and they should. And while I knew that, and while I understood that, we also felt the tug, that bittersweet ache when we saw the photos of them out and about with family. And it does hurt. It wasn't jealousy in a bitter way. It was more like a quiet melancholy, a whisper inside that says I wish that could have been us too, and I'd be lying if I said I didn't feel a little invisible in that moment.

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And there's one thing I really hoped for while they were here, just one. We wanted to go to Cape Cod overnight, just one night. There's this special place right on the water that my husband and I have been going to for 30 years. It holds so many special memories for us, but for the past four years we haven't been able to make it there. My husband's not able to drive longer distances and my own ability to drive fades due to the pain and the fatigue, and that dream began to feel out of reach.

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But I held on to hope quietly, maybe even secretly. I envisioned us all being there during the full moon, by the ocean, together. We invited my son and my daughter-in-law and my grandson, but they weren't able to come. But we did invite them and when it started to look like it might not happen, I felt that familiar wave of grief, not for something tragic but for something deeply human that desire to be part of the memory-making, the joy, the togetherness. When you live with chronic illness, these small but huge dreams carry so much weight.

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But the stars aligned and we went. My daughter and son-in-law made it happen. We spent one unforgettable night at our favorite beach under the light of the full moon. We stayed in the hotel right on the water with three of our grandchildren. I can still feel the imprint of that memory in my heart. We were there during the full moon. It was just absolutely perfect the full strawberry moon and I can still feel the imprint of that memory in my heart. It's still there. My daughter and son-in-law drove and we were passengers, but we made it. The ride was painful. The concrete steps down to the sand were a challenge, but I was determined. I made my way down to the shoreline.

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Each step a quiet victory. And when I finally reached the water, I stood there with my feet buried in the cool, wet sand, the ocean rushing over my toes, and I sobbed, not from pain but from gratitude, from release, from finally being in a place I'd longed for and feared I'd never feel again. You see, that's the thing about chronic illness and pain. It takes so much from you, it steals moments, it shifts plans, it creates a gap between who you are and what you used to do. But when you do get to experience something, when the stars align and the pain takes a backseat even for a little while.

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You hold on tight, because those moments they become sacred. Just sitting there with my husband out under the stars with the full moon was something that we will never, ever forget, and I think my daughter knew that. She knew how much that meant to me. It wasn't just a beach trip. It was healing, it was reclamation, it was being seen. It wasn't just a beach trip. It was healing, it was reclamation, it was being seen.

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We didn't go to the zoo or the museum, and that's okay, because we had those 24 hours where we had them all to ourselves and they were everything. We also had plenty of time at home quiet mornings, laughter in the kitchen, cooking with the grandkids, lying on the bed, solving wordle puzzles and laughing conversations with my granddaughter cards at the table, small joys, real connection. For those two weeks we felt included, we felt supported and, most of all, we felt loved. If you've ever felt left out, forgotten or invisible because of your illness, I want you to know. I see you and I'd love to hear how you handle it. How do you navigate those feelings? How do you manage the ache of wanting to be there but not always being able to? Drop me a message, share your story. Let's keep this conversation going going, because the truth is so many of us are living in that in-between space, wanting to belong, trying not to feel forgotten and figuring it out one breath at a time, and we deserve to be seen, even when we can't always show up.

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Let's talk about something quickly the financial reality of being sick. Being sick is expensive, not just in terms of money, but in every sense of the word. When you lose your health, you often lose your job, and when you lose your job, you lose your income, sometimes your health insurance, sometimes your home, and always your sense of stability. In our case, both my husband and I lost the ability to work and for anyone listening who receives disability, you already know it's nowhere near what you've earned when you were working full-time not even close. But we are grateful grateful for what we do have. We do not focus on what we don't have. We focus on what we do have and we have the important things. But we can't skip over the reality, because the cost of chronic illness isn't just emotional or physical. It's financial and numbers don't lie Doctors, appointments, co-pays, medications, medical equipment, transportation, specialized diets, alternative therapies that aren't covered by insurance, mobility aids, hearing pads, braces, over-the-counter remedies Every single one of those costs something and usually they're not luxuries, they're lifelines. And then there is applying foruries they're lifelines. And then there's applying for social security, disability, ssdi.

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That process, it can be brutal. It's not just filling out forms, it's a full-time job when you're already barely holding your life together. It's paperwork, doctor's notes, legal documentation, denials, appeals, waiting, more waiting. When I applied, it took over a year, 13 months, to be approved, and I was one of the lucky ones. I had enough work credits, I had strong documentation, I had several doctors who advocated for me, and it still felt like climbing a mountain in the dark.

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So many people wait years, they get denied multiple times, they give up or, worse, they don't survive the wait, and all the while the bills don't stop, the medications don't become optional. Life keeps asking you to show up, even when you're running on empty. And I want to say this clearly if you're struggling financially because of illness, you're not lazy, you're not failing, you're not broken. You are doing the best you can with a system that was not built for you and that matters. So I want to talk briefly about the emotional toll of chronic illness and chronic pain, the part we try to keep hidden behind polite smiles and I'm fine answers the emotional weight. My therapist once told me she said when you ask someone how you feel and they say I'm fine, it doesn't seem like it covers enough. So a good comeback, a good response, is I'm good enough. And it's true when someone asks how you're feeling, I'm good enough and you don't need to go into further explanation.

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But living in a body that no longer works the way it used to, maybe never did, can take an enormous toll on your mental health, not just once in a while. I'm talking about the kind of toll that builds quietly over time, the kind that wears down your spirit. One unspoken frustration at a time, depression, anxiety, medical PTSD, grief, shame it's all a part of it. And the hardest part. Most of us feel like we're supposed to just push through it. Be positive, be strong, be grateful. I don't believe in toxic positivity, but I do believe in having a positive mindset to help get through the tough times. But sometimes you're just tired Tired of hurting, tired of explaining, tired of waking up to a body you don't even recognize, tired of having sleepless nights, of being so much in pain, tired of feeling like a burden, tired of grieving a life that used to feel so full.

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I received a message from a listener recently that said and it hit me right in the heart, and she said I feel like I'm fading. People think I'm lazy or antisocial, but I'm just tired of trying to explain a body I don't even understand myself. I felt that I've lived, that I'm living, that Most of you are as well. There have been nights when the pain made me question my worth. Nights where I've laid there in the dark wondering what I bring to the table anymore. Nights where hope felt so far away I couldn't even remember what it felt like. There have been mornings when even trying to get out of bed felt like climbing a mountain. Still is when the idea of showering or eating or responding to a text felt impossible because the brain fog was so thick I couldn't hold a thought for more than a second. And that happens quite a lot, and I know I'm not alone.

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So many people are fighting these silent battles. On top of their physical pain, that emotional weight. It's heavy, heavier than most people realize, and sometimes even heavier than the physical pain itself. You are not weak for feeling that way. You are not broken. You are a human being navigating the unimaginable, and it's okay to need support for your mind and heart just as much as your body.

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And, as I mentioned earlier, one of the most important decisions I made in my own journey was reaching out for help real help, not the kind that says think positive and send you on your way, the kind that sits beside you in the dark and says you don't have to do this alone. For me, that meant working with a great therapist, someone outside of my daily life, someone who could hold space for the parts of me I was too exhausted to explain to anyone else. It changes everything, and maybe for you that kind of support looks different. Maybe it's a counselor or spiritual advisor, a mental health hotline, a trusted friend, a clergy member or even an online support group. Whatever it is, please don't hesitate to seek out emotional help. You don't need to be strong by pretending you're okay. You don't have to tough it out to prove your resilience. Reaching out for support isn't weakness, it's wisdom, it's self-preservation, it's the first step back toward hope, because even when things feel impossibly hard, there is still hope, even if you can't see it yet, even if it's just a flicker in the dark. Hope doesn't always roar, sometimes it whispers, but it's always there. And so is help, but you have to reach for it.

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So how do you let go of what was to make space? What is it to be? How do you navigate the dreams you had for your future? Well, we all have dreams. We all have goals. We all have goals. We had retirement plans, big ones. The dream was to sell the house, tuck our favorite belongings to storage, buy an RV and travel the country together. Road trips, national parks, visiting family windows, rolled down, just having fun. That was our retirement vision. It kept us growing through the hard years, the someday.

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But that dream, it doesn't fit into our retirement vision. It kept us growing through the hard years, the someday. But that dream, it doesn't fit into our bodies anymore. My husband can't drive more than 20 minutes at a time. I can't sit for long without pain taking over. Even just being in a vehicle for 20 to 30 minutes can knock us out for the day. So the RV idea it had to be released, and that hurt.

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There's grief in letting go of what you thought your life would be. So the RV idea it had to be released, and that hurt. There's grief in letting go of what you thought your life would be. There's grief in the practical things, like income and retirement accounts, but there's also grief in the symbolic losses the loss of freedom, the loss of spontaneity, the loss of hope for the future you used to imagine.

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We've had to begin the slow, complicated work of creating a new vision a dream 2.0, if you will, and truthfully, we don't know what that looks like yet. We're still navigating so much uncertainty, we don't have all the answers. But we've come to a place of peace with the unknown, and that took a lot of surrender, a lot of soul searching, a lot of tears. A lot of soul searching, a lot of tears, a lot of grieving and a lot of letting go. And somewhere along the way I've come to believe something really important you can be both exhausted and empowered. Let me say that again you can both. You can be both exhausted and empowered. You can be grieving and grateful and you can feel like everything has changed and still believe that something beautiful can come from what's next?

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The truth is, chronic illness doesn't just rob you of your health. It chips away at your sense of identity, your independence, your dreams. It forces you to reimagine a life you never asked for and a body you didn't expect to live in. And that's a lot to carry. But here's what I've learned there is still a life to be lived. It may look different, it may move slower, it may require adaptation, creativity and more rest than you've ever thought possible, but it's still yours and it still counts. You may have to dream smaller or dream sideways, or dream in a different timeline, but you are still allowed to dream and maybe, just maybe, the dreams we rebuild from broken pieces will be softer, quieter but more rooted in truth, because they come from a lived experience, from the kind of wisdom you can't fake, from strength born in the shadows. You can choose to live in the past, to live in the space of what was, which you hold on so tightly, while letting the hope of tomorrow's possibilities slip through your hands.

Speaker 1:

As devastating as my husband's accident was, if it weren't for that accident we wouldn't have discovered he had a pancreatic cyst that needed further imaging. We would not have had these last few years to spend time together. We have always had a close, loving relationship, but when you go through something as a couple, it can make or break you. We are grateful for the little moments. That transmutes our moments of sadness and pain and uncertainty into moments of opportunities for growth and, many times, joy and laughter. Because anyone who knows the chronic pain and illness journey there are not usually many joyful moments. So when you do have them, you live life joyfully, at least for that moment. And that, my dear kindred spirits, is still a beautiful life. And just remember that healing.

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Healing is not linear, just like grief. You probably heard that phrase before, maybe you've even said it, but when you're living it, when you're waking up in a body that shifts from day to day, what does that actually mean? It means healing doesn't follow a straight, predictable line upwards. It doesn't unfold neatly like checkbox on a list. It doesn't always feel like progress, and some days you might feel strong, maybe even hopeful. You make a meal, you go outside, you find yourself laughing and for a brief moment it feels like you're coming back to yourself. And other days it feels like your body betrayed you again. You wake up in pain, you cancel plans, you reach for your toothbrush and realize that it feels like a mountain. You start to wonder am I going backwards? Am I losing the progress I thought I made? But here's the truth I want you to hold close, especially on those days. A flare-up doesn't erase your progress. A setback isn't failure and a hard day isn't the end of your healing.

Speaker 1:

Healing with chronic illness or pain is about getting back. It's not about getting back to normal. It's about learning to live with a new normal, one that shifts, evolves and sometimes completely surprises you, and that can be frustrating. And sometimes completely surprises you. And that can be frustrating. It can even feel unfair. It can make you feel like you're starting over and over again. I've had those days too. There are moments when I'll be laughing, genuinely enjoying something, and suddenly muscles pass up on my back and my ribs, brings me to tears, just like that. I'm grabbing the heating pad, pausing the moment. It's humbling and sometimes it's heartbreaking. And yet even those moments are part of healing, because healing just isn't about feeling better. It's about learning how to soften into your limits instead of fighting them. It's about listening to your body instead of shaming it. It's about redefining what it means to be worthy, even when you're unwell.

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Sometimes healing looks like a doctor finally hearing you. Sometimes it looks like getting through the grocery store without crying in pain and sometimes it looks like staying in bed and not feeling guilty about it. It's cyclical, it's layered and it's deeply personal. There is no final destination you have to reach to be considered healing. You don't need to earn a badge, you don't have to prove anything, and every time you choose rest or pushing yourself past that edge that we all know is there, every time you ask for help, even when it makes you feel vulnerable, every time you offer yourself some grace instead of criticism, that is healing and the most beautiful thing.

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Healing doesn't have to happen in isolation. Sometimes healing is found in community, in connection, in the simple act of being seen and heard. Exactly as you are, I'm one of those people who have no problem posting online and asking positive thoughts or praise when I'm having a bad pain day. You know what it helps. I keep my friend circle very small and the ones who are there get it. I'm not looking for sympathy. I'm not asking anyone to fix it. I just want to be met with empathy, with presence, and when someone sends a message that simply says I hope you're able to rest today, it lands in my heart like a warm hug. And when someone sends a message that simply says I hope you're able to rest today, it lands in my heart like a warm hug, and it reminds me that I'm not doing this alone. Somehow it takes away the power that pain has over you, even just for a little while.

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So if you're in a hard place right now, maybe in the middle of a flare up or a mental low, or just that invisible heaviness that settles in your chest, please hear me. You didn't mess up, you didn't go backwards, you haven't failed. You are still healing, even here, even now. Reach out to someone, say what you need to say, whether it's a whisper or a shout, whether it's one sentence or a full heart spill, even if it's melting down over a garden hose. Share only what you're comfortable sharing, and those who truly can. They won't judge you, and for the ones who do, you have every right to unfollow, mute or gently remove them from your life, because healing isn't just about your body. It's about protecting your peace. You are allowed to take up space in this world exactly as you are, without explanation and without an apology.

Speaker 1:

So, on the days when everything feels like too much, come back to this truth Healing isn't linear, but healing is still happening and you, my dear soul, are still worthy of love, care and joy, even in the messiest, most uncertain parts of your journey. Maybe no one has ever said this to you before, so let me say it now and say it with my whole heart you are not difficult, you are not exaggerating, you are not too sensitive, you are not lazy, you are not broken, you are not making it all up, you are never too much and you are always, always enough. You are showing up for yourself in a system that too often demands silence over truth, compliance over curiosity. Numbers over names that is brave. Curiosity numbers over names that is brave. That is sacred to every person listening who lives in a body that doesn't always listen. I see you. I am you. You are not weak for needing rest. You are not selfish for setting boundaries. You are not less than because your path looks different than the one you planned. You are resilient, you are empowered. Even on the days you don't feel strong, you are still worthy. Even when you're in pain, you are still healing. Even when it's messy, you are still here, and that matters more than words can say.

Speaker 1:

So if you've made it to this point in the episode and it is a long episode I hope something in these stories and these truths and my truth remind you that you are not alone. You are not alone in the fatigue, not alone in the waiting rooms, not alone in the missed moments, not alone in the grief that comes from living in a body you don't always recognize. And if you're someone who loves someone living with a chronic illness or pain, thank you, thank you. Please don't try to fix it. Just be there, listen with compassion, without judgment, stay, support, believe your presence, your steady patient's presence. It's more healing than you'll ever know.

Speaker 1:

And to those of you walking this road step by step, breath by breath, I want you to know you're not alone. This space, this podcast, this community, it was created for you. So keep going, however slowly. You need to Keep speaking your truth, even when your voice shakes, and, above all, be gentle with yourself. You're doing more than surviving. You're living courageously, honestly and with a kind of strength the world too often overlooks, and that, my kindred spirit, is everything.

Speaker 1:

I truly thank you for being here in this sacred space with me today, for allowing me to speak my truth and for being open to hearing it. I care about you. I care about your story, your journey, your healing, wherever you are on your path. We're all walking this road together and perfectly tenderly and so very human. If this episode touched your heart, if it helped you feel seen, understood or even just a little less alone, I'd be honored. If you shared it with someone who might need to hear these words too. You can always connect with us in the Healing Our Kindred Spirits private Facebook group or visit our public podcast page, healing Our Kindred Spirits. You can also reach out directly through our website or email personally me personally at healingourkindredspirits at gmailcom. I would love to hear your story and, if you feel called to share, know there is space for you here. Until next time, my kindred spirit, be gentle with yourself, be brave in your truth and remember even the unseen wounds deserve compassion. I'm Donna Gaudet and this is Healing Our Kindred Spirits. Thank you.

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Donna Gaudette

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