Major Pain

Jesse Mercury
  • 4.8 (46)
  • HEALTH & FITNESS
  • UPDATED WEEKLY

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. Living with Generalized Pustular Psoriasis

    16H AGO

    Living with Generalized Pustular Psoriasis

    Several years ago, Janene was at a golf tournament when something terrifying happened. Out of nowhere her feet began to burn, as if she were walking on hot coals. She discovered that blisters were spreading across her feet at an alarming rate, as if she were being burned by an invisible fire. As the blisters continued to spread she rushed to the doctor, but nobody had any idea what was going on. After several terrifying days she finally saw a dermatologist who diagnosed her with generalized pustular psoriasis (GPP). She went home with four creams, pain meds and steroids. Thankfully, this intervention helped bring this outbreak of GPP under control. In this episode of the Major Pain podcast, Janene talks us through her experience with generalized pustular psoriasis as well as her complicated chronic illness history. Along with GPP she has also been diagnosed with plaque psoriasis, lupus, Sjogren’s syndrome, Raynaud’s disease and rheumatoid arthritis. As a mother of twins, managing this many diseases has been a challenge. However, her experience with GPP was the most horrific medical trauma she has been through. That’s why she has devoted herself to spreading information and awareness about generalized pustular psoriasis, to help others find their way through this painful disease. Learn more about generalized pustular psoriasis at GPPandMe.com 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

    47 min
  2. Angel on Battling Hidradenitis Suppurativa and Thyroid Cancer

    12/01/2025

    Angel on Battling Hidradenitis Suppurativa and Thyroid Cancer

    In this episode of Major Pain, we continue our talks with people dealing with hidradenitis suppurativa.  Today we talk to Angel, a mother of five who has had multiple health challenges.  A self described “homestead mom”, Angel loves to grow vegetables in the garden and make her own food like butter whenever she is able.  She stays busy homeschooling her autistic son while raising her other four children, including a fifteen month old.  She hopes someday to get a small acreage and have a few animals and live the country life. At thirty years old, she was diagnosed with thyroid cancer and had to have multiple surgeries to drain and remove the liquid filled tumor, and eventually her entire thyroid.  After the surgeries and radiation treatment, she still struggles with getting the right supplements to replace her thyroid hormones, properly absorb nutrition and avoiding fluctuations in weight. After the birth of her son, the skin symptoms that had been an undiagnosed since she was a teenager became much worse.  She had struggled with doctors telling her that she had contact rashes or allergies to certain fabrics or personal care products like deodorant.  Finally, at thirty three years old she got the diagnosis of hidradenitis suppurativa.  While finally being diagnosed was a relief, it was also the beginning of a long road looking for treatments.  She tried Humera but experienced minimal relief with a lot of side effects.  Cosentyx had worked fairly well for her until she became pregnant with her youngest child.  Now she is attempting to get back on a new medication but has struggled with insurance for approval for a year. On this podcast episode she talks us through her journey so far, and discusses her public advocacy as @hsqueen96. 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 PATREON: https://www.patreon.com/majorpainpodcast 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

    46 min
  3. Hidradenitis Suppurativa: Parish’s Path to Acceptance

    11/10/2025

    Hidradenitis Suppurativa: Parish’s Path to Acceptance

    Parish Armstead was only 7 years old when the first signs of hidradenitis suppurativa (HS) appeared. This is a painful inflammatory skin condition that causes boil-like abscesses and scarring, which can occur anywhere that hair follicles grow. These abscesses are known to reform in the same spot even when surgically removed, or connect with each other through tunnels under the skin called tracts. This disease runs in Parish’s family, and growing up it was normal to use hot soaks to treat breakouts. His first surgery was at 11, and he would continue to get surgeries throughout the years as his HS developed. It wasn’t until he turned 18 that a doctor recommended a CAT scan, which discovered a system of tracts under his skin, leading to his diagnosis with hidradenitis suppurativa. In this episode of the Major Pain podcast, Parish tells us what it is like to live with HS. This disease does not only affect the skin—it causes systemic fatigue, necessitates a regimented diet and exercise, and also carries a heavy mental health toll. Parish’s journey has been one of acceptance. At first he rebelled against this disease, not wanting to make the necessary lifestyle changes or even be seen in public— how he has embraced this lifelong challenge, allowing him to discover a deeper sense of self. This upward trajectory began with HS Connect, an advocacy group that Parish is now an active member of. Finally finding community around HS showed him the importance of being visible and speaking up about his journey. He now co-hosts the HS Brotherhood Podcast with Joey Torre (two-time guest of Major Pain) and curates an advocacy platform as HSOpenWounds. Explore HS Connect online: https://hsconnect.org/ 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

    1h 21m
  4. Author Tim Cummings on How His Brother’s Epilepsy Shaped His New Novel

    10/16/2025

    Author Tim Cummings on How His Brother’s Epilepsy Shaped His New Novel

    For Tim Cummings, growing up with a brother who lived with epilepsy often felt like there was a mysterious presence in their shared childhood room. Seizures would often affect his brother Matthew in the middle of the night, a terrifying experience for young Tim to witness. It felt like there was a doorway or a portal opening, connecting Matthew to an unseen realm. This feeling would haunt Tim well into adulthood, particularly after the tragic loss of his brother when Tim was 24. After 40 years as a professional actor, Tim knew he had his own stories to tell. He went back to school, getting his masters in writing, and recently released a new novel inspired by his childhood experiences with Matthew. In The Lightening People Play, fourteen-year-old Kirby writes and produces a play to raise money for a seizure-alert dog for his younger brother Baxter. This production opens a portal through which mysterious figures and symbols appear. This story allows Tim to reckon with his past, immortalizing his brother while allowing for a more uplifting end to his brother’s story. In this episode of the Major Pain podcast, Tim recounts the personal history that inspired his new novel, reflecting on how his brother’s epilepsy impacted their lives. We discuss the creation of The Lightening People Play and the ways in which chronic illness can affect not only the lives of those living through health challenges, but the lives of their loved ones. Learn more about The Lightening People Play on Tim’s website: https://www.timcummings.ink/ Join Tim for an event on 10/26 at The Village Well in Culver City with two stars from the TV show GRIMM, called Spooky Magic in Storytelling. Tickets at https://www.eventbrite.com/e/spooky-magic-in-storytelling-w-tim-cummings-tickets-1743861439509 November is Epilepsy Awareness Month, and if anyone wants to join in a 34-mile run/walk to support, they can sign up here: https://www.facebook.com/EpilepsyFoundationofAmerica/posts/-your-34-mile-walkrun-challenge-november-1-30-take-on-the-challenge-and-raise-fu/927116259443626/ The eBook for The Lightening People Play is now available on OverDrive, which serves more than 81,000 libraries and schools in 106 countries with the industry’s largest digital catalog. https://www.overdrive.com/media/12388451/the-lightning-people-play Play Watch the episode on YouTube, listen on your favorite podcast platform or here on our website. 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

    1h 5m
  5. Heartfelt Indie Film ‘The Paper Bag Plan’ Features Authentic Disability Representation

    09/22/2025

    Heartfelt Indie Film ‘The Paper Bag Plan’ Features Authentic Disability Representation

    In The Paper Bag Plan, the new film from writer/director Anthony Lucero, a father named Oscar (Lance Kinsey) who discovers he has cancer, decides to teach his disabled son Billy (Cole Massie) to become a grocery bagger in the hopes of landing his first job and beginning a life of independence. This is a deeply personal story, inspired by Anthony’s experience growing up with a disabled brother who required full-time care from their mother. This film is notable for the authenticity of its depiction of disability, providing a dream role for Cole Massie, who has been acting since the age of 7. In this episode of the Major Pain podcast we are joined by writer/director of The Paper Bag Plan Anthony Lucero, star of the film Cole Massie and his mother Michelle, to discuss the creation of this impactful independent film. We hear stories about the writing, casting and filming, along with the real-life inspiration for the story. We also hear from Cole what it was like growing up with cerebral palsy, and how Michelle had to fight the public school system for accommodations. If you live in the Seattle area, don’t miss a special screening of The Paper Bag Plan at the Majestic Bay Theatres in Ballard on October 5th at noon, where host of Major Pain Jesse is the General Manager! There will be a live Q&A from Anthony, Cole and Michelle after the film. Proceeds will be donated to United Cerebral Palsy. Find tickets here: https://www.majesticbay.com/movies/1000029073-the-paper-bag-plan/ Learn more about The Paper Bag Plan (and Anthony’s first film East Side Sushi) on the Blue Sun Pictures website: https://bluesunpictures.com/ Play Watch the episode on YouTube, listen on your favorite podcast platform or here on our website. 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

    51 min
  6. Doctors Ignored Alia’s Mystery Illness Until It Was Almost Too Late

    09/08/2025

    Doctors Ignored Alia’s Mystery Illness Until It Was Almost Too Late

    In the lifespan of this podcast we have never heard a story quite like Alia’s. Up until she was 27, she was living a healthy, active life. She was a vegetarian since the age of 15, and an avid gym-goer who continued to hit personal bests on lifts. Using her degree in philosophy with an emphasis in biomedical ethics, she works as a Research Data Coordinator for Oncology Research in Iowa. But at 27 her life was flipped upside down when a mysterious seizure kicked off a years-long, life-altering struggle. From the beginning of this medical odyssey, Alia has received shockingly dismissive treatment from doctors. They claimed her seizures were caused by stress, insisting the only treatment she needed was therapy. When she was diagnosed with intracranial hypertension around the time her seizures started, her doctor said it was just anxiety and she should take a bath. Alia applied her experience as a medical researcher to her own case, noticing that there was a link between her seizures and a drop in blood sugar, but doctors refused to examine this link. In fact, they accused her of injecting herself with insulin because her blood sugar was repeatedly dropping so low. Soon she was having gastrointestinal issues, getting extremely bloated when eating, accompanied by sharp, stabbing pains that felt like “glass shards, nails, and acid in your stomach.” She would literally pass out from the pain of trying to eat. She was slowly forced to eat less and less, switching to smoothies, and then Ensure to try to keep nutrients in her body. She quickly lost 65 pounds, but doctors refused to do anything about it because her BMI was still within normal range. Instead of helping her get the feeding tube she would need to survive, doctors accused her of starving herself for attention. In this episode of the Major Pain podcast, Alia talks us through the impossible choices she has been forced to make over and over again on this incredibly difficult journey. At multiple points she has almost entered hospice care when the struggle seemed like it would be fruitless. Thankfully, through the Undiagnosed Disease Network and a few exceptional doctors across the country who took her seriously, Alia continues to persevere. She hopes that by sharing her story, she can help others with similar undiagnosed conditions avoid some of the struggles she has faced. Learn more about Alia’s journey on her blog: https://waitwiah.blogspot.com/ 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

    1h 41m
  7. A Novel Approach to Neonatal Abstinence Syndrome

    08/06/2025

    A Novel Approach to Neonatal Abstinence Syndrome

    Tara Sundem took the first steps on her journey to co-founding Hushabye Nursery while working as a neonatal nurse practitioner in neonatal intensive care units.  She would help care for babies suffering from neonatal abstinence syndrome (NAS), what used to be referred to as babies born addicted to various drugs.  The truth is that these babies are born dependent on these drugs but not addicted.  NAS is the term for those babies going through the withdrawal process, just like anyone else stopping exposure to drugs.  These babies would sometimes have to stay 30 days or more in the NICU without parents there.  Tara began to realize that there had to be a better way.  She wanted to give the babies a voice. After several encounters with parents who wanted to stay with their babies, she tried to calm a baby that was on the verge of getting a dose of morphine, the common treatment for babies in the NICU for NAS to prevent them from having a seizure.  She took the baby to a dark, quiet room and began to rock the baby while deeply breathing to calm herself like in yoga class.  This environment proved to be exactly what this baby needed, avoiding the need for morphine.  Tara had a new mission. In this episode of the Major Pain podcast, Tara shares her unique approach to neonatal abstinence syndrome. She co-founded Hushabye Nursery 5 years ago with the goal of helping babies be ok, helping parents care for those babies, and helping the family stay together.  She realized that Hushabye could meet families where they are, that opioid addiction is not a moral failing and that helping the family is helping the baby.  These babies are in danger of having multiple early adverse childhood experiences (ACE’s) very early in life that will put them at risk of many physical and mental health challenges later in life.  In this episode of the Major Pain podcast Tara shares how Hushabye has made it their mission to help babies with NAS get the help they need while keeping families together. Learn more about Hushabye Nursery on their website: https://hushabyenursery.org/ Play Watch the episode on YouTube or Spotify, listen on your favorite podcast platform or here on our website. 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

    51 min
  8. Stacey From Rare Patient Voice on Her Path to Advocacy

    07/16/2025

    Stacey From Rare Patient Voice on Her Path to Advocacy

    Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles with preparing for your oldest to graduate high school and your youngest to enter middle school are enough. Stacey has taken on those challenges as well as health related twists and turns, not only with herself, but also her daughter.  Stacey and her daughter Iris had parallel health crises on the small island that they call home. When her daughter was just 4 days old she had blood in her diapers and that started a journey that ended in an overnight flight to Children’s Hospital of Philadelphia (CHOP). She was eventually diagnosed with Crohn’s Disease around her third birthday. This, alongside allergies to dairy, tree nuts, peanuts, and eggs made her growth and development an uphill battle for much of her childhood before current treatments like biologics proved more effective. Before her daughter’s diagnosis Stacey had been thinking her fatigue was just the stress of working and raising two kids. That was until the day she found a lump in her neck and was quickly diagnosed with thyroid cancer. Thankfully surgery was quick and successful, but the long term effects of having half of a thyroid continue to this day.  These experiences have led Stacey to the position she holds now, working for Rare Patient Voice. They work to connect patients with rare diseases and companies looking to do focus groups and surveys about the lived experience of people with rare and chronic illnesses. This work connecting patients to paid opportunities to share their experiences as well as acting as a patient advocate has allowed Stacey to use her personal experience to create community around the world, centered around health challenges that people often experience in isolation. Use our affiliate link to sign up for Rare Patient Voice at https://rarepatientvoice.com/MajorPainPodcast Play Watch the episode on YouTube, listen on your favorite podcast platform or here on this website! 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

    1h 5m
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4.8
out of 5
46 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
    201
  • Rating
    Explicit
  • Copyright
    © Major Pain Podcast
  • Show Website
    Major Pain