Dear body, I'm listening

Donna Piper
  • 5.0 (3)
  • Alternative Health
  • Updated Weekly

Dear Body, I'm Listening is the podcast for women living with chronic pain, mysterious symptoms, and invisible illness. Hosted by movement therapist, Pilates instructor, and chronic illness navigator Donna Piper, this show is a sanctuary for those who've tried everything, felt dismissed, and are still searching for answers. If you've ever felt like your body is speaking a language no one else understands—you're not crazy, and you're not alone. In this space, nothing is off the table. We talk openly about swelling, fatigue, brain fog, body shame, and more. We go beyond diagnosis to explore what may be worth investigating—and more importantly, how to reconnect with yourself in the process. Through somatic spirituality, movement, and truth-telling, Donna offers support, insight, and hope. Because healing isn't linear, and neither are we.

  1. Aug 13

    Dear Body, It Runs in the Family: What Lipedema Genetics is Finally Revealing

    "This is fascinating, and is also exactly the kind of science we need to handle responsibly because epigenetics is not a new way to blame yourself. If future research shows environmental or epigenetic factors and how they influence lipedema expression, that is exciting. But that does not mean that you caused the disease to come out when you were stressed, that you ate wrong, that you failed to regulate your nervous system. No. Susceptibility, predisposition, hormones, biology, environment, and gene expression can interact in extraordinary, complicated ways, and this is a very complicated disease. The purpose is understanding that interaction to create better treatments, not better ways to blame yourself." —Donna Piper  For most of her life, Donna was told her body was a lifestyle problem — eat less, move more, blah blah blah. In this Dear Body Book Club episode, she opens Lipedema: Principles and Practice of Diagnosis and Treatment, edited by Stanley Rockson, MD, Leslyn Keith, OTD, and Catherine Seo, PhD, and dives into the genetics section — Chapters 3, 4, and 5.  Donna doesn't read the book to you line by line. She translates the genome-wide association studies, the acronyms, and the dense clinical language into plain English, then filters it through her own 53 years of living undiagnosed. The question shifts from "why does my body look this way?" to "what's actually happening inside the tissue?" — and that shift changes everything. In this episode, we discuss: Why an estimated 40% to 89% of women with lipedema report a family history — and why that range is so wide Why researchers believe lipedema is often passed down through the paternal line, even though men rarely show visible symptoms What a genome-wide association study (GWAS) actually is, explained without the jargon The UK Biobank study and how researchers built a "proxy lipedema phenotype" to work around chronic underdiagnosis Two genetic regions — VEGFA and GRB14-COBLL1 — linked to blood vessel formation and body fat distribution Findings from a 200-woman UK cohort, including an average age of onset around 16.8 years old The AKR1C1 gene and its connection to progesterone metabolism Why there is still no single validated genetic or blood test for lipedema The TNXB gene and its overlap with a form of Ehlers-Danlos syndrome, connecting hypermobility to lipedema biology What multiomics research (transcriptomics, metabolomics, lipidomics) revealed inside lipedema tissue itself Elevated inflammatory markers, including IL-1beta, IL-6, and TNF-alpha, found in lipedema tissue The "Fat Atlas" concept — why fat in different parts of the body may behave like different tissue entirely How estrogen, progesterone, and major hormonal transitions like puberty and menopause factor into lipedema onset Why epigenetics matters here, and why it is not a reason to blame yourself The real technical reasons lipedema research moves slowly, from liposuction-damaged samples to small patient cohorts 🗒️ Donna's Sticky Notes The highlights I don't want you to miss — if you only remember three things from this episode, remember these: Sticky Note #1: Don't forget dad's side of the family. If lipedema doesn't seem to show up on your mother's line, look to your father's — photos, family members, body shapes. Inheritance appears to run through the paternal line even when fathers show no visible symptoms themselves. Sticky Note #2: There probably isn't one lipedema gene. It's not one gene causing lipedema on its own — it's how genetic predisposition interacts with hormones, fat biology, connective tissue, vascular pathways, metabolism, lymphatic function, and inflammation, all at once and differently in every body. Sticky Note #3: Lipedema tissue appears to be biologically different tissue. Researchers are finding real differences in gene expression, lipids, metabolites, inflammatory signaling, fat cell development, blood vessel pathways, and connective tissue genes. The better question isn't "why do I have so much fat here?" — it's "what is happening inside this tissue to make it behave this way?" 💛 What this means in plain English None of this research hands you a genetic test you can take to your doctor tomorrow. What it does offer is direction. Researchers are seeing real, measurable differences inside lipedema tissue — in genes, lipids, hormones, and inflammation — not just differences in how much fat someone carries. That distinction matters, because it moves the story away from blame and toward biology. It also explains why two women can have the same diagnosis and completely different experiences of pain, swelling, and progression. And it's why looking at your father's side of the family, not just your mother's, can open up a piece of your history you didn't know to look for. Key Takeaways Family history shows up in an estimated 40% to 89% of lipedema cases, but the strongest inheritance signal appears to run through the paternal line, even when fathers show no visible symptoms themselves. Two genetic regions, VEGFA and GRB14-COBLL1, showed significant association with lipedema in UK Biobank research, tied to blood vessel formation and fat distribution rather than a single "lipedema gene." There is currently no validated genetic or blood test for lipedema — diagnosis still depends on clinical evaluation, which is exactly why patient and provider education matters so much. Multiomics research uncovered more than 4,400 gene expression differences, 900 lipid changes, and 600 altered metabolites in lipedema tissue compared to typical fat. Inflammatory markers, including IL-1beta, IL-6, and TNF-alpha, appear elevated in lipedema tissue, suggesting inflammation is part of the tissue environment, not the whole explanation. The TNXB gene, linked to a form of Ehlers-Danlos syndrome, offers an early biological clue for why hypermobility and lipedema so often show up together in the same women. Hormonal transitions — puberty, pregnancy, perimenopause, and menopause — are consistently tied to lipedema onset and progression, pointing researchers toward estrogen and progesterone signaling pathways. Studying lipedema tissue is genuinely difficult because most samples come from liposuction, a process that can damage the very tissue architecture researchers need to examine. A Question to Sit With Have you ever looked at your father's side of the family for the bruises, the heaviness, the body shapes that never quite matched the rest — or has your search always started and stopped with your mother's line? 💛 Connect With Me If this episode resonated with you, I'd love to hear from you.  ✨ Follow the podcast.  ⭐ Leave a review.  📚 Share this episode with someone navigating lipedema or chronic illness.  And if you're reading along with me, let me know:  What was your biggest takeaway from this chapter?

  2. Aug 6

    Move Smart, Not Hard: The Movement Mindset Chronic Illness Actually Needs with Tyler Bramlett

    "It's not about pushing yourself and judging yourself and trying to change how you look. It's about accepting yourself and learning how to appreciate your body and using that as fuel to show up and take care of it at the end of the day." —Tyler Bramlett Chronic illness movement doesn't have to mean choosing between pain and progress — and this episode makes the case for a third option. Donna sits down with Tyler Bramlett, co-founder of WeShape, whose own body forced him to rebuild everything he thought he knew about fitness after two major injuries and five knee surgeries. What emerges is a conversation less about workouts and more about relearning how to trust a body that hasn't always felt trustworthy. This episode is for anyone living with hypermobility, EDS, POTS, migraine, fibromyalgia, lipedema, or any invisible condition where movement helps — but the wrong kind of movement makes everything worse. Tyler and Donna dig into why high-intensity, no-pain-no-gain fitness culture actively harms chronically ill bodies, and what mindful, scalable movement looks like instead. Listeners will walk away understanding why "20-plus failed routines" is the norm, not the exception — and why that's a sign the model is broken, not the person. Key takeaways: Hypermobile joints get injured by overshooting end range of motion, not by moving too much — awareness of that range matters more than intensity. Chronic tension in the neck and traps can worsen migraine symptoms, and learning to engage opposing muscles can help release that tension over time. Self-hatred as a motivator eventually backfires, because it trains the brain to keep disliking the body no matter what changes. Movement scores — tracking strength, mobility, balance, and core function — offer a way to measure progress without relying on the scale. Starting with two 10-minute sessions a week is more sustainable than an hour five days a week, and consistency over years builds capacity that intensity never will. Recovery isn't linear — peaks and valleys are part of the process, not evidence that something has gone wrong. Try Tyler's free movement assessment: www.weshape.com/dearbody Connect with Donna:  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/thedonnapiper Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Apple Podcast: https://tinyurl.com/Dear-Body-Im-Listening   Resources:  🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you!  Send your questions, stories, or flare-up confessions to donna@donnapiper.com,  and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included.  5 days battery life  Manufactured by Polar, the world leader in heart-rate monitoring  Designed for illness, not fitness  HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 Episode Highlights: 02:13 Meet Tyler Bramlett: The Injury That Redefined Fitness 06:44 Hypermobility, EDS, and Overshooting Your Limits 11:34 Why High-Intensity Workouts Fail Chronic Illness Bodies 14:48 Breaking the One-Step-Forward, One-Step-Back Cycle 19:58 Becoming Your Own Guru: Mindful vs Mindless Movement 23:07 Body Image, the Fitness Industry, and Raising Daughters 31:41 Inside WeShape: Personalized Movement Progressions 40:00 Quantifying Progress With Movement Scores 43:03 Start Small: The Power of Two 10-Minute Routines 50:28 Try WeShape Free and Where to Find Tyler

  3. Jul 30

    Dear Doctor, Please Look Again | Dear Body Book Club: Chapter 2

    "Dear Body… I will remember that I am not only a patient. I am your witness. I am your advocate, and I am your partner." —Donna Piper In this episode of the Dear Body Book Club, Donna explores Chapter Two of the new medical textbook Lipedema: Principles and Practice of Diagnosis and Treatment, edited by Stanley G. Rockson, MD; Leslyn Keith, OTD; and Catherine Seo, PhD. "Chapter Two, Addressing Lipedema: Challenges to the Primary Care Physician," was written by Matthew Carmody, MD. This chapter looks at seven major challenges primary care providers face when diagnosing and caring for people with lipedema. But it also asks something bigger: What would healthcare look like if the patient's lived experience were treated as a form of expertise? Donna translates the chapter's clinical language into everyday conversation and explores what compassionate, collaborative lipedema care can look like—from differential diagnosis and physical examination to pain, weight stigma, treatment planning, mental health support, and multidisciplinary referrals. BUY THE BOOK Read along with the Dear Body Book Club: Lipedema: Principles and Practice of Diagnosis and Treatment Affiliate disclosure: This may be an affiliate link, which means I may receive a small commission if you purchase through it, at no additional cost to you. IN THIS EPISODE We discuss: - Why lipedema may be missed or diagnosed as obesity or lymphedema - How lipedema, obesity, and lymphedema can occur together - Why each condition still needs to be recognized and treated separately - Why BMI alone does not provide a complete clinical picture - How body-fat distribution and waist-to-height ratio can offer additional information - Why coping with chronic symptoms may cause patients to underreport their pain - The value of asking a patient to describe a typical day in her life - How lipedema can affect pain, fatigue, heaviness, movement, sleep, social life, and quality of life - A plain-language explanation of what may be happening inside lipedema tissue - Why the patient is an important co-expert in her own care - What a respectful, collaborative lipedema examination can look like - Why treatment goals need to be individualized - The role of office staff, follow-up systems, and care coordination - The psychological effects of lipedema and repeated medical dismissal - Weight stigma, internalized anti-fat bias, and healthcare avoidance - Why primary care physicians are important in coordinating multidisciplinary care - Possible referrals for compression, MLD, CDT, movement, nutrition, mental health support, weight management, vascular care, and surgery - Why sustainable, patient-specific changes are more realistic than an overwhelming list of new rules THE SEVEN CHALLENGES PRESENTED IN CHAPTER TWO 1. Differentiating lipedema from—and identifying it alongside—obesity, lymphedema, and other co-occurring conditions 2. Understanding the patient's lived experience 3. Defining and explaining the pathophysiology of lipedema to patients and healthcare colleagues 4. Transforming the traditional medical model into one based on patient-provider collaboration 5. Accommodating and caring for people with lipedema within a primary care practice 6. Supporting the psychological effects and addressing biases associated with lipedema 7. Coordinating care, providing resources, and making appropriate referrals DONNA'S STICKY NOTES Sticky Note 1 Lipedema, obesity, and lymphedema can coexist—but they are not interchangeable. A patient may have one, two, or all three conditions. Each one needs to be identified so that the patient receives care for what is actually present instead of having every symptom blamed on weight. Sticky Note 2 Coping can hide the severity of chronic illness. People who have lived with pain, heaviness, fatigue, and restricted movement for years may stop reporting those symptoms because they have learned to build their lives around them. Sometimes asking, "What is a typical day in your life like?" reveals more than asking for a number on a pain scale. Sticky Note 3 The patient is not the least-informed person in the room. The clinician brings medical education and diagnostic knowledge. The patient brings years of experience living inside the body being examined. The best care happens when both kinds of expertise are treated with respect. KEY TAKEAWAYS - A thorough lipedema assessment involves more than weighing the patient or calculating BMI. - Lipedema can exist without obesity, and obesity can exist without lipedema. - Obesity may aggravate lipedema and may contribute to secondary lymphedema, but it should not erase the presence of lipedema. - Pain may be experienced as aching, tenderness, burning, tightness, congestion, heaviness, or discomfort with light touch. - People with lipedema may minimize their symptoms because those symptoms have become their normal. - A respectful physical examination should include explanation, consent, communication, and attention to the patient's comfort. - Treatment goals may include reducing pain and congestion, improving mobility, supporting emotional health, increasing disease knowledge, stabilizing weight when appropriate, and considering surgery when clinically indicated. - Conservative care may include compression, intermittent pneumatic compression, manual lymphatic drainage, complete decongestive therapy, water exercise, gentle movement, skincare, nutrition support, and patient education. - No medication is specifically recommended in this chapter as a treatment for lipedema itself. - The psychological burden of lipedema is not evidence that the disease is psychological. - Weight stigma is not treatment and can contribute to healthcare avoidance, distress, and poorer well-being. - Primary care physicians do not have to provide every treatment themselves, but they can help patients build and coordinate an informed care team. CHAPTER RESOURCES The chapter includes several practical tables and resources for clinicians and patients reading along: - Table 2.1: Diagnoses associated with functional venous insufficiency leading to lymphatic failure and lymphedema — page 20 - Table 2.2: Weight-management strategies based on WHO weight-status classifications — page 21 - Table 2.3: Practical strategies for the management of lipedema — pages 24–25 - Table 2.4: Physical examination checklist for lipedema — page 27 - Figure 2.3: Understanding the pathophysiology of and interventions for lipedema — page 29 - Table 2.5: Building the office treatment care team — page 30 - Table 2.6: Roles and responsibilities of office staff in a clinical practice — page 31 - Table 2.7: Referrals to specialists for lipedema management — page 33 - Table 2.8: Referrals for diagnosis-specific interventions — page 34 - Table 2.9: Communicating general lifestyle recommendations for patients with lipedema — page 35 RESEARCH AND REFERENCES Primary chapter Carmody M. Addressing lipedema: challenges to the primary care physician. In: Rockson SG, Keith L, Seo C, editors. *Lipedema: Principles and Practice of Diagnosis and Treatment.* Springer Nature; 2026. pp. 17–36. References cited in Chapter Two 1. Allen EV, Hines EA. Lipedema of the legs: a syndrome characterized by fat legs and orthostatic edema. *Proc Staff Meet Mayo Clin.* 1940;15(15):184–187. Available from: https://klosetraining.com/wp-content/uploads/2021/03/1940-Lipedema-of-the-Legs.pdf  2. Faerber G, Cornely M, Daubert C, Erbacher G, Fink J, Hirsch T, et al. S2k guideline lipedema. *JDDG: Journal der Deutschen Dermatologischen Gesellschaft.* 2024;22(9):1303–1315. https://doi.org/10.1111/ddg.15513  3. Sudduth CL, Greene AK. Lymphedema and obesity. *Cold Spring Harbor Perspectives in Medicine.* 2022;12(5):a041176. https://doi.org/10.1101/cshperspect.a041176  4. Herbst KL, Kahn LA, Iker E, Ehrlich C, Wright T, McHutchison L, et al. Standard of care for lipedema in the United States. *Phlebology.* 2021;36(10):779–796. https://doi.org/10.1177/02683555211015887  5. Klock S, Ziegler CG, Dischinger U. Obesity and its comorbidities, current treatment options and future perspectives: challenging bariatric surgery? *Pharmacology & Therapeutics.* 2023;251:108549. https://doi.org/10.1016/j.pharmthera.2023.108549  6. Keith L, Seo C, Wahi MM, Huggins S, Carmody M, Faerber G, et al. Proposed framework for research case definitions of lipedema. *Lymphatic Research and Biology.* 2024;22(2):93–105. https://doi.org/10.1089/lrb.2023.0062  7. Rubino F, Cummings DE, Eckel RH, Cohen RV, Wilding JPH, Brown WA, et al. Definition and diagnostic criteria of clinical obesity. *The Lancet Diabetes & Endocrinology.* 2025;13(3):221–262. https://doi.org/10.1016/S2213-8587(24)00316-4  8. Fukaya E, Kolouri R. Nonsurgical management of chronic venous insufficiency. *The New England Journal of Medicine.* 2024;391(24):2350–2359. https://doi.org/10.1056/NEJMcp2310224  9. Purnell JQ. Definitions, classification, and epidemiology of obesity. In: Feingold KR, Ahmed SF, Anawalt B, Blackman MR, Boyce A, Chrousos G, et al., editors. *Endotext.* South Dartmouth, MA: MDText.com, Inc.; 2000. Available from: https://www.ncbi.nlm.nih.gov/books/NBK279167/  10. Dudek JE, Białaszek W, Gabriel M. Quality of life, its factors, and sociodemographic characteristics of Polish women with lipedema. *BMC Women's Health.* 2021;21(1):27. https://doi.org/10.1186/s12905-021-01174-y  11. Bauer AT, von Lukowicz D, Lossagk K, Aitzetmüller M, Moog P, Cerny M, et al. New insights on lipedema: the enigmatic disease of the peripheral fat. *Plastic and Reconstructive Surgery.* 2019;144(6):1475–1484. https://doi.org/10.1097/PRS.0000000000006280  12. Dudek JE, Białaszek W, Ostaszewski P, Smidt T. Depression and appearance-related distress in functioning with lipedema. *Psychology, Health & Medicine.* 2018;23(7):846–853. https:

  4. Jul 23

    Acceptance Isn't A White Flag

    "Acceptance is not saying 'I love everything about this'. Acceptance is saying 'I'm done making myself the enemy. Acceptance is not a white flag. It is not surrendering into suffering. It is surrendering the war against yourself." —Donna Piper Body acceptance gets messy fast when your body is changing without your permission — and that's exactly what this episode of Dear Body, I'm Listening digs into. Host Donna Piper unpacks the real, often uncomfortable difference between acceptance, resignation, and avoidance for anyone living with chronic illness, invisible symptoms, or a body that no longer looks or functions the way it used to. This isn't a "just love your body" pep talk. Donna is mid-recovery from lipedema surgery, dealing with swelling, a changed shape, and a formal event she has nothing to wear to — and she's not pretending she's at peace with it. Instead, she walks through why acceptance, resignation, and avoidance can look identical from the outside but feel completely different inside the nervous system, and why chasing acceptance too fast can backfire. Along the way, she brings in Acceptance and Commitment Therapy (ACT) and what chronic pain research actually says about psychological flexibility — without turning it into toxic positivity. This episode is for anyone who's been medically gaslit, dismissed, or told to just "accept" a diagnosis they never wanted. It's for the days when body positivity feels like a lie and grief feels more honest than gratitude. Key takeaways: • Acceptance, resignation, and avoidance can look the same from the outside but feel completely different in the body — and most people cycle through all three. • Resignation says "there's nothing I can do"; acceptance says "I may not be in control of this, but I still have choices." • Chronic pain research links acceptance to better adjustment and less disability — but acceptance never means the pain isn't real or symptoms are "in your head." • Avoidance isn't a failure — it can be a protective emotional airbag, but it becomes a problem when it becomes the whole house. • You can accept that you don't accept your body yet, and that's still a valid form of honesty. • A simple breath practice (inhale, longer exhale, "this is where I am today") can help regulate the nervous system without forcing false positivity. • Ready to stop fighting your body and start listening to it? Press play on this episode now. Connect with Donna:  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/lipedema_donna  Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Podcast: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774  Episode Highlights: 01:06 Acceptance, Resignation, and Avoidance: The Difference 05:08 Real Talk: Why Body Acceptance is Complicated  19:56 Connective Thread: Acceptance and Commitment Therapy (ACT) 29:38 Myth Busters 33:20 Feel Good Flow 36:25 Shared Education and Lived Experience  Resources:  🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you!  Send your questions, stories, or flare-up confessions to donna@donnapiper.com,  and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included.  5 days battery life  Manufactured by Polar, the world leader in heart-rate monitoring  Designed for illness, not fitness  HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 Reference:  The research language in this episode is mostly drawn from Acceptance and Commitment Therapy, or ACT, which uses acceptance, mindfulness, values, and committed action to support psychological flexibility. ACBS describes ACT as using acceptance and mindfulness strategies alongside commitment and behavior-change strategies to increase psychological flexibility. For chronic pain, research has repeatedly found that higher pain acceptance is associated with better adjustment — including less depression, anxiety, disability, pain interference, fear, catastrophizing, and greater life satisfaction or self-efficacy. A 2023 overview of systematic reviews and meta-analyses summarized ACT evidence for adults with chronic pain across pain intensity, pain-related functioning, quality of life, and psychological factors. Another meta-analysis found significant effects on depression, anxiety, and quality of life after ACT for chronic pain. "Resignation" is not always the exact research term, so I translated the research more carefully through passive coping, helplessness, and avoidance. Studies on chronic pain have found passive coping is associated with more depression, pain, flare activity, functional impairment, and lower self-efficacy, while fear-avoidance factors are associated with anxiety, depression, pain-related disability, and pain intensity.

  5. Jul 16

    What Is Lipedema, Really? | Dear Body Book Club: Chapter 1

    "Maybe we don't have every answer yet, but we have something we didn't have before: momentum, curiosity, research, hope, a textbook." —Donna Piper Welcome to the very first official Dear Body Book Club episode! In this new series, we're opening the books that are shaping the future of chronic illness care and translating the research into everyday language. Today we're exploring Chapter One of the newly released medical textbook: Lipedema: Principles and Practice of Diagnosis and Treatment  Edited by Stanley G. Rockson, MD, Leslyn Keith, OTD, and Catherine Seo, PhD (Springer Nature, May 2026). Together, we discuss Chapter One: "What Is Lipedema? Moving Towards a Widely Accepted Definition" by Sandro Michelini and José Luis Simarro Rather than reading the chapter word for word, I pull out the concepts that stood out to me, translate the medical language into plain English, and explain why these ideas matter for those of us living with lipedema. In this episode, we discuss: What lipedema is—and what it isn't The history of lipedema and why recognition matters The World Health Organization's recognition of lipedema in ICD-11 Germany's recognition of lipedema within its healthcare system The newly approved U.S. ICD-10-CM diagnosis codes expected to take effect in October 2027 Why lipedema is different from obesity Why BMI alone often misses women with lipedema Genetics and why lipedema may be inherited through either side of the family Hormones, puberty, pregnancy, perimenopause, and menopause Emerging research on connective tissue and childhood-onset lipedema Clinical diagnosis and staging Pain, inflammation, and tissue changes Common comorbidities associated with lipedema Current diagnostic tools Conservative and surgical treatment options discussed in Chapter One Where lipedema research is headed Resources Table 1.1 – Differential Diagnosis of Lymphedema and Lipedema Adapted from Chapter One of Lipedema: Principles and Practice of Diagnosis and Treatment (Michelini & Simarro, 2026). Clinical Feature Lymphedema Lipedema Family history Possible Often present Gender Male or female Almost exclusively female Limb involvement One or both limbs Usually both limbs (bilateral) Hands and feet Usually involved Usually spared Age of onset Birth, childhood, or adulthood Most commonly at puberty (may occur before puberty) Joint hypermobility Usually absent Often present Pitting edema Usually present Usually absent Stemmer sign Usually positive Usually negative Pain Usually absent Common Response to conservative therapy Generally good Varies Response to surgery Variable Generally good for appropriate candidates Compression garments Flat-knit custom garments (Class II–IV) Flat-knit custom garments (Class I–III), depending on the individual Clinical follow-up Regular As needed 💛 What this means in plain English One of the biggest takeaways from this table is that lipedema and lymphedema are not the same condition, even though they're often confused. Women with lipedema are more likely to have: Symmetrical enlargement of both legs (and sometimes arms) Feet and hands that are usually spared Painful fat tissue Joint hypermobility A negative Stemmer sign A family history of similar body shapes People with lymphedema are more likely to have: Swelling that includes the feet or hands A positive Stemmer sign Pitting edema Less pain in the affected tissue Different treatment goals and progression A trained clinician looks at all of these features together—not just one—to help determine the correct diagnosis. Key Takeaways from Chapter One Lipedema is a recognized disease of adipose tissue—not simply obesity. Lipedema most commonly affects women and often runs in families. Hormones appear to influence lipedema, but genetics and connective tissue may also play important roles. There is currently no single laboratory test to diagnose lipedema. Diagnosis is based on clinical examination. Complete Decongestive Therapy (CDT) can improve symptoms but does not remove pathological lipedema tissue. There is currently no medication scientifically proven to treat lipedema itself. Liposuction is an important therapeutic option for appropriately selected patients. Bariatric surgery does not treat lipedema. More research is still needed to better understand the disease. Research & References This episode is based primarily on: Michelini, S., & Simarro, J. L. (2026). What Is Lipedema? Moving Towards a Widely Accepted Definition. In S. G. Rockson, L. Keith, & C. Seo (Eds.), Lipedema: Principles and Practice of Diagnosis and Treatment. Springer Nature. Additional references cited by the chapter's authors can be found in the reference section of Chapter One (pp. 13–15) of the textbook. About the Dear Body Book Club The Dear Body Book Club is a series on Dear Body, I'm Listening, where we explore books that are shaping the future of chronic illness care. Each episode translates medical research into plain language while remaining faithful to the authors' work. These conversations are designed to help listeners better understand their bodies and the evolving science behind chronic illness. They are not a substitute for reading the original textbook or receiving personalized medical care. If you'd like to explore the research in greater depth, I encourage you to purchase the textbook and read the chapter for yourself. 💛 Connect With Me If this episode resonated with you, I'd love to hear from you. ✨ Follow the podcast.  ⭐ Leave a review.  📚 Share this episode with someone navigating lipedema or chronic illness. And if you're reading along with me, let me know: What was your biggest takeaway from Chapter One?  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/lipedema_donna  Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Podcast: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774  Episode Chapters: 01:56 Welcome to the Dear Body Book Club 05:24 The 1940 Origins of Lipedema Recognition 09:27 What Is Lipedema? Defining Abnormal Adipose Tissue 12:47 BMI Myths and the Genetic Link Through the Father's Side 16:44 Hormones, Connective Tissue, and Childhood Onset 18:24 Treatment Options: CDT, Compression, and Surgery 27:27 Why Bariatric Surgery Doesn't Solve Lipedema 31:47 Donna's Sticky Notes  37:24 Dear Body Letter 38:59 Shared Education and Lived Experience

  6. Jul 9

    19 Liters Later: The Progress Update No Before-and-After Could Tell You

    "Remember that you can celebrate what your body can do without demanding more than it has to give… Progress does not have to be perfect, linear, or photogenic to be real." —Donna Piper Six months into her lipedema surgery recovery, Donna sits down to tell the truth about what actually changed — and what didn't.  In this honest update, she shares what life looks like after two leg surgeries and 19 liters removed: more mobility, less pain, better circulation, and wearing shorts in public for the first time in decades. But this isn't a polished before-and-after story. Donna also opens up about the parts no one shows — appetite loss, hair shedding, upper-body swelling, and the emotional whiplash of feeling free in her legs while her nervous system, MCAS, POTS, and hypermobility EDS keep asking for patience. She walks through her shifting compression routine, the aqua therapy classes that rebuilt her ability to move, and what it meant to host friends for the Fourth of July after years of watching life from her bedroom window.  Along the way, she busts three persistent myths about surgical recovery — including the idea that healing should be linear, photogenic, or total. This episode is a grounded, unfiltered look at what it really means to heal inside a chronically ill body: not a straight line, but two things being true at once. If you're navigating lipedema, surgical recovery, or a body that's changing faster than your emotions can keep up, this one's for you. Listen to the full episode now: https://tinyurl.com/29njdb9n  Connect with Donna:  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/lipedema_donna  Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Podcast: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774  Episode Highlights: 02:01 Real Talk: 19 Liters and 6 Months Later  15:24 Connective Thread: More Mobility Does NOT Mean Unlimited Energy  31:32 Myth Busters 35:01 Feel Good Flow Resources:  🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you!  Send your questions, stories, or flare-up confessions to donna@donnapiper.com,  and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included.  5 days battery life  Manufactured by Polar, the world leader in heart-rate monitoring  Designed for illness, not fitness  HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15  Quotes:  01:34 "Healing is rarely a straight line; sometimes it looks like a miracle, sometimes it looks like needing two days recovery after a beautiful day, and sometimes it looks like both things being true at the exact same time." —Donna Piper  08:17 "There's something about not having to manage your body every single second that creates some more spaciousness, more choice, and more freedom." —Donna Piper 18:58 "I have to remember that I still have this multitude of symptoms that are not in my control. I hear them, I listen to them, and then I manage my energy as best I can throughout the day." —Donna Piper  25:44 "That is also something that comes up with surgery— as your body changes and morphs, so is your idea of your body, how it feels like." —Donna Piper 29:24 "With these conditions, it's really about every single day reframing yourself that you haven't fallen behind, you didn't do anything wrong. Some of these things with your body are just out of control. The reality is, sometimes we're just at the mercy of our bodies, and we just need to listen to what they need every moment of every day." —Donna Piper 33:23 "Something that is joyful doesn't mean that you're not going to have flares and fatigue… If you exert yourself past your capacity, you're going to have to take some time to rest and recover." —Donna Piper 39:54 "Remember that you can celebrate what your body can do without demanding more than it has to give… Progress does not have to be perfect, linear, or photogenic to be real." —Donna Piper Your Host:  Donna Piper is a Relationship Coach, Trauma Expert, and Akashic Records Healer dedicated to empowering successful single women to transform their love lives and attract fulfilling partnerships without sacrificing their professional ambitions. With a holistic approach blending therapeutic coaching, trauma-informed techniques, and Akashic Records wisdom, she guides clients to release limiting beliefs, heal emotional blocks, and cultivate unshakable self-trust. Her work focuses on aligning mind, body, and spirit to create lasting change—helping clients refine communication, deepen self-worth, and build the foundation for healthy, loving relationships. Donna's sessions are a haven for those ready to break cycles, embrace vulnerability, and design a love life that harmonizes with their thriving careers. For women committed to both personal and professional fulfillment, she offers tailored strategies to unlock their full potential and step into the relationship of their dreams.

  7. Jul 2

    From Decade-Long Misdiagnosis to AI-Powered Chronic Illness Care with Haresh Patel

    "Stay curious and start believing in some things you may not want to believe in. Leave all professions open, and if you do, you can find a cure." —Haresh Patel  A decade-long misdiagnosis is what pushed one founder to build an AI chronic illness diagnosis platform — and it started with a doctor who asked one simple question no one else had: what's your whole story?  Donna sits down with Haresh Patel, founder of Sanare Health, to unpack how his own mast cell autoimmune disease went undetected for ten years while specialist after specialist treated only the piece in front of them. The turning point came from a doctor who spent two hours mapping Haresh's full history instead of the standard thirteen and a half minutes most patients get — and found the answer by connecting decades of scattered symptoms instead of chasing one at a time.  From there, the conversation moves into the deeper systemic issue: why women wait longer and see more doctors for the same symptoms, and how AI can help patients centralize their full medical and personal history before they ever walk into an appointment. It's a candid, sometimes unexpected conversation about staying curious, refusing "there's no cure" as a final answer, and understanding that your body's full story might be the missing clue your doctor never had time to ask for.  If you've ever felt dismissed or rushed out of an appointment, this episode will change how you prepare for the next one. Loved this conversation? Rate and review Dear Body, I'm Listening on Apple Podcasts here: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774 Connect with Donna:  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/thedonnapiper Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Apple Podcast: https://podcasts.apple.com/us/podcast/dear-body-im-listening/id1822768774  Resources:  📖  Book The Ghost in My Body: What Twelve Doctors Couldn't Find by Haresh Patel:  https://a.co/d/05z4KfwZ 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you!  Send your questions, stories, or flare-up confessions to donna@donnapiper.com,  and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included.  5 days battery life  Manufactured by Polar, the world leader in heart-rate monitoring  Designed for illness, not fitness  HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 Episode Highlights: 02:00 Meet Haresh Patel 06:09 The Doctor Visit That Sparked Sanare Health 11:45 Misdiagnosed for a Decade: A Mast Cell Disease Story 16:05 Costa Rica, Grief, and an Unconventional Path to Healing 27:00 How Sanare Health's AI Builds Your Medical Story 33:32 Why Even Healthy People Are Turning to Longevity Tools 36:19 The Tinnitus Case: The Art of Asking Better Questions 42:14 Raising Investment and Building a Mission-Driven Team 47:31 Fixing the Broken Doctor-Patient Match With AI 49:13 How to Join Sanare Health's Beta   Connect with Haresh:  Born in India, raised in New Hampshire, and trained as an electrical engineer at Notre Dame, Haresh built a 25-year Silicon Valley career before founding Mercatus — growing it from a kitchen-table startup into a global private equity data standard, acquired by State Street in 2021. But his most profound achievement was personal: after 55 years of mysterious symptoms that stumped twelve specialists, he applied the same systems thinking that drove his business success to solve his own medical mystery. That breakthrough now fuels his mission to intelligently bridge conventional and alternative medicine — and inspired his forthcoming book chronicling the journey from diagnostic dead-ends to healing. Website: http://hareshpatel.ai/  LinkedIn: http://www.linkedin.com/in/hareshpatel  Instagram: https://www.instagram.com/mydiagnosticmd/#  YouTube: https://youtube.com/@mydiagnosticmd?si=zlN3A-K3QuT-PHLd  Connect with Sanare AI Health Beta Program Website: https://sanarehealth.ai/

  8. Jun 25

    How Lyme Disease Stole a Decade —And What Came After with Diana Gordon

    "I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon  When your brain won't stop looping through everything that's wrong, distraction isn't avoidance — it's medicine. That's one of the hard-won truths poet and novelist Diana Gordon shares in this episode of Dear Body, I'm Listening, after spending a decade navigating undiagnosed Lyme disease, neurological sleep disruption, and the particular grief of the world going on without you. Diana opens up about five years of dismissed symptoms before finally finding effective treatment, what the loneliness of chronic illness actually feels like from the inside, and the one friend whose phone calls every three days proved more healing than any support group. She also shares the unexpected story of how reading her unpublished novels aloud to a bedridden friend — someone living with a severe, rare pain condition — not only mitigated that friend's pain in real time, but reignited Diana's own creative life. Three books are now coming out as a direct result. Diana reads two original poems live in this episode:  "Letter from a Long Illness" — a meditation on the invisible solidarity between people sick in separate rooms, written to every person who doesn't know if they'll ever get out of it.  "Medicine in Mystery" — sparked by a Chinese acupuncturist who diagnosed her with demonic possession and prescribed dragons. She also talks binaural beats, the medicinal power of Netflix, and why conversation — just ordinary, everyday conversation — may be the most underrated healing tool there is. Diana's poetry book Loosestrife for Porcupines is available now at dmgordon.com. Her Substack, Leaf Sheep, delivers short animal poems to your inbox — perfect for interrupting the loop on a hard day. Poem 1: "Letter from a Long Illness" If you have been to this land as I have been, where I am now, You will know the chill fog. Know that the fig tree, so far from light, will not fruit. Maybe you are here, even as I write. Maybe you haven't escaped. We can't see each other — alone in different sick rooms of the same country, borders closed, pinned motionless. We did not meet at the atrium. You didn't complain your jeans were tight and choose the Reuben. I didn't use a matchbook to study a table leg. We don't do simple things here, where minutes are broken, and we can't make plans. Though you can't see or hear me, I'm writing on the faith that saying it keeps possibility alive, that it might not be too late for either of us to hike the prairie and collect sand spurs on our socks, to drive ourselves into thunderstorms. Not too late to stroll down Madison Avenue, admiring shirts displayed on seas of opalescent buttons. We might yet pass each other on the boardwalk, you in your tight jeans, shopping artisan stalls, your little dog in a basket on your handlebars, waiting for the borders to open — on the faith that thinking it keeps possibility alive, I am hoping to meet you there. Poem 2: "Medicine in Mystery" I've come at last to the Chinese doctor — diagnosis: demonic possession, spirochetes unbound by tissue, blood, or bone. His cure: release the dragons — iridescent white to fight the unnamed, salmon-colored to attack the known. I imagine them with folded wings, small enough to swim in human cells, sent after demons equally ancient, equally small, wh0 show themselves in cytoplasm the way creatures in opaque ponds create concentric rings unseen, break the skin of the water, Then return to hide in the mud. The war proceeds between the winged and wingless, And as in all histories, the winner will write it. The winner will be deemed good, Though every demon, electric, toxic, feels it is a child of the universe. Yet isn't there something always wrong about invasion? something always noble about defense So, in the end, I stand on a lacquered bridge over swollen runoff, a churning pond behind — It's April, ice on all the edges, the air hurts wonderfully to breathe, the water foams white, the sky, late and high, is riddled with salmon-colored contrails. The last dragons leaving. Connect with Donna:  Website: https://www.donnapiper.com/   LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/thedonnapiper Facebook: https://www.facebook.com/thedonnapiper  YouTube: https://www.youtube.com/@thedonnapiper  Resources:  📖 Loosestrife for Porcupines by DM Gordon  🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you!  Send your questions, stories, or flare-up confessions to donna@donnapiper.com,  and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included.  5 days battery life  Manufactured by Polar, the world leader in heart-rate monitoring  Designed for illness, not fitness  HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 📖 Get Tricia's Book: Heal Your Hunger: 7 Simple Steps to End Emotional Eating Now  Episode Highlights: 03:03 Meet Diana: A Lyme Disease Odyssey 08:33 Why So Many Are Getting Lyme Disease 15:08 Crushing the Loneliness of Chronic Illness  19:03 Conversation is a Medicine 29:00 Brain Looping Challenges 35:52 Poem: Letter From a Long Illness 39:54 Poem: Medicine in Mystery 45:04 Grab Diana's Books 52:02 Life After a Lost Decade Quotes: 02:02 "A lot of times, when we go through stuff, that's when some of our deep creativity comes out. There's always that beauty in the crack." —Donna Piper 06:32 "There was a year and a half when I was on 81 pills a day, taken 17 different times a day…  I think this is a pretty common journey for people who are struggling with mystery illnesses." —Diana Gordon 14:35 "Depression is a real part of chronic illness. You need to know what works for you, too." —Donna Piper 19:17 "Just having a conversation is so healing when you can't do anything else." —Diana Gordon 26:03 "It didn't take a whole organization to do it, just that one person and that conversation. I think conversation is medicinal." —Diana Gordon 51:20 "You need to find these little moments to slow down and to heal yourself very slowly. It's a very long game. But by doing that and finding pleasures in that, then you really start to heal." —Donna Piper 52:10 "I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon  53:57 "You can get better, you do get better." —Donna Piper  Connect with Diana: Website: https://www.dmgordon.com/   LinkedIn: https://www.linkedin.com/in/ddmgordon/   Instagram: https://www.instagram.com/d_m_gordon_author/   Facebook: https://www.facebook.com/profile.php?id=61588185188220  Substack: https://ddmmgordon.substack.com/  YouTube: https://www.youtube.com/channel/UC3M3_JOf5wJOdhaAr4HwHIA  BlueSky: https://%20https//bsky.app/profile/dmgordon.com

See All (58)

Ratings & Reviews

5
out of 5
3 Ratings

About

Dear Body, I'm Listening is the podcast for women living with chronic pain, mysterious symptoms, and invisible illness. Hosted by movement therapist, Pilates instructor, and chronic illness navigator Donna Piper, this show is a sanctuary for those who've tried everything, felt dismissed, and are still searching for answers. If you've ever felt like your body is speaking a language no one else understands—you're not crazy, and you're not alone. In this space, nothing is off the table. We talk openly about swelling, fatigue, brain fog, body shame, and more. We go beyond diagnosis to explore what may be worth investigating—and more importantly, how to reconnect with yourself in the process. Through somatic spirituality, movement, and truth-telling, Donna offers support, insight, and hope. Because healing isn't linear, and neither are we.

Information

  • Creator
    Donna Piper
  • Years Active
    2025 - 2026
  • Episodes
    58
  • Rating
    Explicit
  • Copyright
    © 2025
  • Show Website
    Dear body, I'm listening

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