Major Pain
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.
Episodes
April 23, 2025 • 47 mins
Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning...
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April 9, 2025 • 100 mins
Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three interviews with previous guests, updating us on their health journeys.
Joey tells us about a surgery to manage his hidradenitis suppurativa, plus updates on his amazing advocacy work. Check out Joey's original episode here: https://majorpainpodcast.com/living-with-hidradenitis-suppurativa/Sign up for the upcom...
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March 26, 2025 • 63 mins
Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding mental health. She is the host of the Rough Edges podcast, which provides tools for mental health education and examines the intersection between faith and mental health. Sarah's faith journey has been an integral part of her bipolar journey, in fact her diagnosis initially triggered a crisis of faith that she has s...
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March 12, 2025 • 46 mins
Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to the discovery of his type 1 diabetes. Although meningitis resolved in about a month, diabetes would become a constant companion. 17 years later, Alex has learned a tremendous amount about living with this disease, in a journey that has gone from rebellious to transformative.
Alex is the host of the Rise to th...
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February 26, 2025 • 75 mins
Pallavi's journey through chronic pain began with physical agony, but led to spiritual transformation. She grew up in India with a deep love of dance that had turned into a passionate career in her early 20s. On a fateful day about 6 months after her marriage in 2011, she fell from her bike while racing her cousins and went sliding down the road. This accident ended her dance career, leaving her in extreme pain that did not improve...
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February 12, 2025 • 55 mins
The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth. Preeti experienced a premature birth at 24 weeks in 1989, weighing only 2 pounds, an astonishingly early birth that she feels incredibly lucky to have survived. Premature birth can impact health in a variety of ways over the course of someone's life, including neurodevelopmental challenges, cardiovascular disease...
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January 29, 2025 • 68 mins
Danni Hertel (aka foodie_with_da_booty) has turned her passion for baking into a full time career. She is known for putting a fresh spin on classic treats. Her recipes have been featured in the Houston Chronicle, she has worked with dozens of celebrities and she has even won Best Holiday Cookie for the Houston area in 2021. While she enjoys bringing tasty treats to the masses, behind the scenes not everything is so sweet. For almos...
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January 15, 2025 • 73 mins
Looking back through the history of her medical challenges, it becomes painfully obvious that Tayler was born with the connective tissue disease EDS (Ehlers-Danlos Syndrome). Unfortunately, the lack of quality healthcare in her youth prevented this diagnosis for many years. She struggled physically throughout childhood, often being accused of laziness or being unwilling to participate, when in fact physical activity was more diffic...
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December 31, 2024 • 70 mins
After recovering from CFS (chronic fatigue syndrome aka myalgic encephalomyelitis) Miguel Bautista felt like he had a new lease on life. At the height of his illness he was unable to walk or sit up in bed and needed meals blended so he could drink them. Now he is running marathons, traveling, spending quality time with loved ones and running a successful CFS recovery program. His journey through chronic illness was extremely tumult...
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December 18, 2024 • 53 mins
When Amee was first diagnosed with epilepsy at 8 years old, one simple medication was able to control her disease. This made it easy to hide her illness from almost everyone in her life, which remained the case for about 35 years. Of course there were complications along the way. When looking to start a family she faced the potential that this medication could cause birth defects, but with the help of an understanding doctor Amee w...
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December 4, 2024 • 62 mins
In 1982 Steve Lovelace was pinned by a felled tree that barber chaired, meaning it split lengthwise while being cut down. His injuries were severe - his face and several vertebrae were crushed. Steve found himself instantly paralyzed and stuck under this tree, where he would remain for hours while waiting for help. Eventually he was taken to the hospital, where he would begin the months-long recovery process. Miraculously, Steve wo...
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November 2, 2024 • 53 mins
Andi and Jesse are married! For their wedding registry they asked their community to donate to an Undiagnosed Disease Fund, with the goal of raising enough money to provide genetic testing for an individual in need. Full genome sequencing can be helpful for individuals with a mystery illness, either to point towards an answer, or rule out upwards of 7,000 diseases in one test. This process was very helpful in Jesse's own search for...
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October 23, 2024 • 66 mins
Living with a chronic health condition is difficult enough, but managing health records, medications and symptom tracking can feel impossible. That's what the folks at Guava are trying to fix. They have created a free centralized holistic health management tool that integrates with over 50,000 health organizations across the US (including MyChart), top fitness/medical devices and even local weather to bring you personalized insight...
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October 16, 2024 • 38 mins
Danielle was born a micro preemie at just 25 weeks, weighing only 1 pound 8 ounces. Diagnosed with cerebral palsy, doctors gave her a .5% chance of living a meaningful life. Alongside cerebral palsy, she also lives with POTS and scoliosis, but this has not stopped her from owning a restaurant at the age of 25 and empowering individuals with disabilities. With the support of her family, friends, therapists, and caregivers, Danielle ...
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October 2, 2024 • 53 mins
Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That's exactly how she came to suffer from medically induced pustular psoriasis, living through a horrific year where her skin was basically being burned from the inside o...
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September 24, 2024 • 60 mins
Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn't until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate to find anything that might help. That's when she discovered the work of Lucinda Bateman and the Bateman Horne Center, a clini...
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September 17, 2024 • 58 mins
For Kindra, it's been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on her functionality. Two years ago she was told she fit the profile of someone with lupus, but this past June the rug was pulled out from under her w...
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September 11, 2024 • 73 mins
In 5th grade Billie's classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person's spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was bent 53 degrees on top and 38 degrees on bottom and she also developed kyphosis, an excessive rounding of the upper back. These two conditions were so severe th...
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September 4, 2024 • 97 mins
When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a years-long diagnostic odyssey that would see Angela diagnosed with several chronic illness including psoriatic arthritis, psoriasis, small fiber neuropathy...
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August 28, 2024 • 79 mins
Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges.
Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndr...
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