Major Pain

Jesse Mercury

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at majorpainpodcast@gmail.com.

  1. 3d ago

    Relearning Joy After a Lifetime of Medical Trauma with Neuronal Dysplasia

    When your body is a medical stomping ground, how do you transform it back into a vessel deserving of joy and pleasure? For Melissa—a Seattle-based mental health counsellor—this question arises from a lifelong exploration filled with relapses, flare-ups, malnutrition, and self-discovery. With compassion and confidence, she shares the story of her rare major pain: neuronal dysplasia. At just two days old, Melissa underwent her first surgery. Faced with the news that, if their daughter survived, she would likely be deaf, blind, and mute, her parents spent years traveling in search of answers. In elementary school, Melissa’s disease was finally officially diagnosed: neuronal dysplasia is a rare condition impacting the nerves that control intestinal function. After countless surgeries for true and pseudo-bowel obstructions, Melissa has no large intestine and only a partial small intestine. Years of malnutrition and dehydration from her body’s inability to absorb nutrients means that today Melissa receives total parenteral nutrition (TPN) through an IV directly into her bloodstream. Anyone who has had to abstain from food for any length of time knows what hunger feels like. Because Melissa’s stomach is always empty, she feels these same cues and pangs, but decades of careful experimentation have taught her that eating anything orally results in painful and debilitating symptoms or even surgery. As such, she seeks out alternatives to the pleasurable sensations most people derive from food. From scented candles to cozy clothes and bodywork practices, Melissa provides her body with other affirmations of its innate need for physical pleasure. The rifts wrought from decades of internalized ableism drove Melissa to hide her disease and work herself too hard to “make up” for her perceived deficits. Ultimately, this resulted in another diagnosis: severe autonomic nervous system dysfunction. She shares what she went through during what she considers the hardest part of her experience and how she worked—and is working still—to shift the mindset that led her there and rejoin all parts of herself into one full, proud human worthy of love, and success, and pleasure. Shed light on the disconnection of chronic illness and how we begin to heal: Finding gratitude and joy in the face of an unpredictable and debilitating disease; The evolution of eating when your body can’t use what you feed it; The emotional and mental strain of constantly partitioning your “healthy” and “unhealthy” parts; The importance of intentionality in recovery and rediscovery. Learn more about the Seattle-based Center for Chronic Illness: https://www.thecenterforchronicillness.org/ https://www.youtube.com/watch?v=YMxXRttl3s8 Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    Relearning Joy After a Lifetime of Medical Trauma with Neuronal Dysplasia

  2. Aug 19

    Love Your Body, Own Your Health: Discussing Type II Diabetes with Kelvin Davis

    What does “body positivity” mean to you? To Kelvin Davis, it began as a gap in the market. Women’s clothing advertising was leaning, more and more, into diversity in their models, while menswear seemed content to maintain the status quo of ultra-ripped or ultra-thin. Kelvin launched his body-positive menswear blog, Notoriously Dapper, to address this lack in the fashion industry. Since then, he has published two books and modeled for big names, including Lululemon and Gap. When his Type II Diabetes diagnosis came in 2021, Kelvin had a new crossroads to face: the intersection between loving his body and initiating positive changes for the sake of his health.  In this episode of Major Pain, Jesse and Kelvin discuss the mechanisms and symptoms of this challenging disease and the medication and lifestyle change approaches that can improve its outcomes. Since enrolling in a diabetes education course, Kelvin has a strong grasp of what his symptoms—like high A1C levels and nerve pain in his hands and feet—mean for his well-being and longevity. Today, he manages his condition with movement and nutrition habits, but the  process wasn’t easy. Particularly in Black communities, where access to health care, food, and education is all too often scarce, recognizing and acting on the healthier choices can be daunting and expensive. With a heartfelt combination of tough love and empathy, Kelvin discusses the importance of “choosing hard now and easy later” rather than “easy now and hard later,” and how this tradeoff plays into his new book, “Be a Good Man, Not a Nice Guy.” Body positivity must go beyond just accepting and showcasing larger bodies. Kelvin calls for taking accountability for your shortcomings and ownership in the pursuit of long-term health. For the sake of the future—his own and that of his two young daughters—he’s living that journey every day.  Learn more about Kelvin and Notoriously Dapper: https://notoriouslydapper.com/  Buy Kelvin’s book, Be a Good Man, Not a Nice Guy: https://bookshop.org/p/books/be-a-good-man-not-a-nice-guy-a-guide-to-true-masculinity-kelvin-davis/923e9e4fd6fcc492 https://www.youtube.com/watch?v=0roefciyJ6Q Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    Love Your Body, Own Your Health: Discussing Type II Diabetes with Kelvin Davis

  3. Aug 5

    The Knowledge to Live Better: ALS, Advocacy, and Acceptance with Mindy Uhrlaub

    How do you live with the ever-looming uncertainty of being a gene carrier for a fatal disease? Amyotrophic lateral sclerosis—better known as ALS or Lou Gehrig’s disease—was long believed not to be genetic. Today, however, research shows that 10-15% of cases are linked to the mutation of various genes. The journey of potential future illness is one Mindy Uhrlaub has navigated since 2018, when she learned that she carries the C9OF72 genetic mutation. Since losing her grandfather and then her mother to ALS, Mindy has navigated the precariousness of questioning every symptom she develops, the hard knowledge that her children could also be carriers, and the decisions that come with any life-changing diagnosis: how will this knowledge impact my approach to the present and the future? In Mindy’s case, it has led her to advocacy and authorship. She is a founder of the End the Legacy community for carriers of ALS and FTD (frontotemporal degeneration) and the author of the Amazon bestseller, “Last Nerve: A Memoir of Illness and the Endurance of Family.”  Everyone with chronic illness or the genetic potential to develop it must select a unique path. Mindy has chosen to immerse herself in the promise the future holds. She takes every preventative step available to her, including avoiding chemical exposure and inflammatory foods and taking an ALS drug prophylactically. Through End the Legacy, she and other community members pursue policy change and education through webinars and summits. She participates in numerous studies and shares the struggle of facing down the inevitable emotional triggers. For Mindy, this approach is not about fearlessness but about devoting her time, and her heart, to the life-affirming aspects of her unpredictable situation. Learn more about End the Legacy, a non-profit org for genetic carriers of ALS and FTD: https://www.endthelegacy.org/ Buy “Last Nerve: A Memoir of Illness and the Endurance of Family”: https://www.mindyuhrlaub.com/last-nerve https://youtu.be/l9w6YdTifVc Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    The Knowledge to Live Better: ALS, Advocacy, and Acceptance with Mindy Uhrlaub

  4. Jul 9

    ‘Green Plastic Whistle’ Makes Music with Multiple Sclerosis as Disease and Direction

    Pointing to Edward’s first symptom of Relapse–Remitting MS is tricky. From anxiety in his 20s, to poor sleep and numb hands, to back pain and difficulty walking, the road to diagnosis has been rocky. When he finally received confirmation—in the form of a terrifying MRI showing countless lesions on his brain and spine—Edward was a new father in his early 30s. Coming to terms with a lifelong condition that presents differently for everyone was a process that has slowly shifted his outlook on both his past and his future. In this episode, we speak with Edward about what his journey through symptoms and diagnosis looked like, and reflect on how facing down a debilitating illness can change your outlook on life if you let it. A musician from a young age, today Edward is exploring live performance with his solo project, Green Plastic Whistle, and facing an aversion to fame that derailed some previous opportunities. As he puts it, being told you have an unpredictable disease, that has the potential to impact anything from bladder function to your ability to see, really puts fear into perspective. With cautious optimism and a balanced take on the pros and cons of the medical system, Edward and Jesse delve into how you envision your future when you don’t know what your health will hold. They explore the promising remyelination medications that have the MS community abuzz and what it’s like to start a family in the midst of disease progression. Edward’s experience with Multiple Sclerosis has given him a new perspective on how we prioritize our lives and what’s possible when you begin to face the future without fear. Learn more about Edward’s solo project, Green Plastic Whistle:  https://www.instagram.com/greenplasticwhistle/  Listen to Green Plastic Whistle on Spotify: https://open.spotify.com/user/0b6gv1y0qrwlp4bp3ztmusnsa?si=d557f3eb1a0947c2 https://www.youtube.com/watch?v=hV_reArTc7g Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

  5. Jun 26

    Long COVID to Long-Term Wellness: Katie Brennan’s Journey to Build ThriveNinety

    Katie Brennan’s experience with Long COVID began in the earliest days of the pandemic, while she was working with the UK’s National Health Service on data-driven policy changes to improve care for patients. Though her experience with the acute phase was relatively minor, instead of steadily recovering, she developed a range of ongoing symptoms—difficulty breathing, sudden heart rate spikes, dilated pupils, fatigue, brain fog, and difficulty focusing. Although she was still functional enough to work, everything felt harder, and she no longer felt like herself. Eventually, she realized she had Long COVID. Navigating the push–crash cycle is common for many people with chronic illness: Katie would push herself too hard, frustrated by what her body could no longer handle, then crash and face hours or days of exhaustion and other symptoms as she recovered. A second COVID infection eroded what gains she had made. Recognizing the need to try something new, Katie attended a fitness class run by former biathlon Olympian and world champion Andrea Henkel Burke. Andrea’s combination of gentle but purposeful movement and various nervous system regulation techniques gave her participants small, tangible ways to control the body’s shift out of near-constant fight-or-flight into essential rest-and-repair.   Together, Katie and Andrea founded ThriveNinety, which aids people with Long COVID and other infection-induced conditions by translating science into simple, practical tools that help restore how their bodies function and help them rebuild capacity and performance. Their program provides movement and other sensory inputs that are accessible for anyone, wherever they’re at in their illness recovery or maintenance. They also guide participants through nutritional changes known to have a positive effect, such as anti-inflammatory diets. Throughout her journey, Katie has discovered the phenomenal impact of listening to her body’s cues and making proactive adjustments that enable her to live a healthy, happy, active life with Long COVID. ThriveNinety shows others how they, too, can improve and even thrive in the face of long-term illness. Learn more about ThriveNinety’s programs and mission: https://www.thriveninety.com/  Buy the book, Recovery Kitchen: https://www.thriveninety.com/recovery-kitchen Play Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    Long COVID to Long-Term Wellness: Katie Brennan’s Journey to Build ThriveNinety

  6. Apr 18

    Season 6 Premiere! Catching Up With Danni, Courtney, Joan and Kaitlyn

    Today we kick off the sixth season of Major Pain by catching up with previous guests Danni, Courtney, Joan and Kaitlyn. Danni is a baker who was risking extreme pain every time she would eat, and doctors had no idea why. She returns to the show with a huge update: she finally has a diagnosis! She tells us how a pocket of fluid around her heart and shortness of breath finally triggered doctors to take her seriously, opening a diagnostic pathway that has resulted in treatment and answers. Listen to her original episode here: https://majorpainpodcast.com/every-time-this-baker-eats-she-risks-intense-abdominal-pain/ Courtney used to think of herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis for her mystery illness. She returns to the show with a new diagnosis of Yao syndrome and new treatment plan, and is even seeing the doctor her disease is named for! Listen to her original episode here: https://majorpainpodcast.com/the-infuriating-contradictions-of-undiagnosed-illness/ Joan lives with a complex and frustrating form of GERD that has prevented her from lying flat for the past 5 years. She returns to the show having recently undergone surgery called toupet fundoplication, aimed at managing her symptoms. She describes the surgery and the outcome, discussing whether she feels it was a worthwhile procedure. Listen to her original episode here: https://majorpainpodcast.com/joan-of-heart-from-pedal-playhouse-on-her-complex-medical-journey/ Kaitlyn originally appeared on the show as a recent college graduate who had been diagnosed with 14 chronic illnesses. She returns with an additional diagnosis and a new outlook on life. Listen to her original episode here: https://majorpainpodcast.com/kaitlyn-tells-us-about-living-with-14-chronic-illnesses/ Play Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    Season 6 Premiere! Catching Up With Danni, Courtney, Joan and Kaitlyn

  7. Mar 25

    From Scheuermann’s Disease to Project 55: Justin Goodman’s Incredible Story

    Justin Goodman is on a mission with his organization Project 55: to educate, equip and empower the 55% of adults with mental health struggles that aren’t getting the care they need. His journey to this mission was a tumultuous one, in which he has overcome addiction, learned to manage Bipolar II, and faced the lifelong challenge of Scheuermann’s disease. Justin is now focused on helping others in crisis, having developed a deep sense of gratitude for the lessons he has learned along the way. In this episode of the Major Pain podcast, we sit down with Justin to hear the incredible story of everything he has overcome, and how it inspired the founding of Project 55. As a teenager he developed Scheuermann’s disease, a skeletal disorder characterized by uneven growth of the vertebrae, leading to a forward curvature of the spine known as kyphosis. At first it was assumed he was just having growing pains, but as his disease rapidly progressed it began to restrict every aspect of his life. By the time it was determined he was actually experiencing Scheuermann’s disease he was given two options: manage the pain with opioids, or undergo extreme surgery. He chose prescription pain management. Since this was in the time before narcotics were not closely monitored, he soon developed a dangerous dependence. If not for an intervention from his closest friends, he would not have survived. Justin now manages the pain from Scheuermann’s disease using a variety of alternative techniques, including conditioning his lower back, mobility work and staying away from inflammatory foods. He has also found relief from a manual therapy called rolfing, in which the rigid fascia around the muscles is ground down to make it malleable. Justin is an avid golfer, and although Scheuermann’s disease initially took him away from the sport, he is now able to participate again due to the success of his disease management. Justin also discusses his journey with Bipolar II, and how mental health struggles inspired him to create Project 55. As a passionate advocate for others in need, Justin has translated his own struggles into a powerful platform for change. Learn more about Project 55 on their website: https://project55.org/ Play Watch the episode on YouTube, listen here on our website or on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    From Scheuermann’s Disease to Project 55: Justin Goodman’s Incredible Story

  8. Feb 22

    Joyfully Disabled: Living With Over 20 Diagnoses

    As a baby, Sarah didn’t know that her diagnosis with asthma would be the first in a long list of diagnoses that would eventually grow to over twenty.  Today she manages these conditions with the help of her husband Dan and cat Daisy.  She juggles her self care with working as a fundraiser for a charity organization and screening films for the South by Southwest film festival.  When not working, she finds joyful movement as a ballroom dancer. In this episode of the Major Pain podcast, Jesse talks with Sarah about her health journey, including several illnesses we have never discussed on the show before.  The first is exercise induced laryngeal obstruction (EILO), an asthma like condition involving the vocal chords closing, which prevents patients from bringing in air properly during intense physical activity.  The second is lichen sclerosus, a skin condition causing discolored and thin skin.  Due to the sensitive and personal nature of this condition it can be extremely hard to discuss, making first-hand information scarce. Other topics of discussion include central auditory processing disorder, making it difficult to understand words spoken in a noisy or distracting environment, and managing neurodivergence on top of multiple physical conditions. Sarah is continuing to work at being joyfully disabled. She hopes to show others that with a little accommodation you can live a full life with chronic illness.  She wants others to take the advice she has the most trouble taking herself, to be compassionate to yourself, and know that gratitude is not a competition. Play Watch the episode on YouTube or Spotify, or listen on your favorite podcast platform. PODCAST LINKS WEBSITE: https://majorpainpodcast.com EMAIL: majorpainpodcast@gmail.com SUBSCRIBE: https://majorpainpodcast.com/subscribe SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIA INSTAGRAM: https://www.instagram.com/majorpainpodcast TIKTOK: https://www.tiktok.com/@majorpainpodcast YOUTUBE: https://www.youtube.com/@MajorPainPodcast FACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKS RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast NEURAHEALTH: https://www.neurahealth.co/majorpain

    Joyfully Disabled: Living With Over 20 Diagnoses
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4.9
out of 5
48 Ratings

About

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at majorpainpodcast@gmail.com.

Information

  • Creator
    Jesse Mercury
  • Years Active
    2021 - 2026
  • Episodes
    208
  • Rating
    Clean
  • Copyright
    © Major Pain Podcast
  • Show Website
    Major Pain

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