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 17, 2024 • 100 mins
We’re kicking off the fourth season of Major Pain by catching up with previous guests! Michelle and Bek both have new diagnoses that are recontextualizing their journeys, while Simon is feeling completely cured. As Major Pain enters its fourth season, now is a great time to support the show on […]
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April 3, 2024 • 69 mins
Kait lives with miserable malalignment syndrome, which means that the bones in her legs are rotated abnormally. Since childhood her femurs were pointed inwards while her tibias rotated outwards, causing her knees to face each other. Even though this rotation was plainly visible to the naked eye, it still took […]
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March 27, 2024 • 69 mins
Colby has 11 chronic illness and mental health diagnoses. These include chronic pain (currently diagnosed as fibromyalgia), PCOS (polycystic ovarian syndrome), asthma, IBS, eczema, PTSD, depression, anxiety, bipolar, ADHD and somatic symptom disorder. That last diagnosis might be the least well-known of Colby’s illnesses. According to psychiatry.org, “somatic symptom disorder […]
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March 20, 2024 • 48 mins
DeAnna Pursai and her sister Angel describe themselves as a package deal. A foundational experience growing up in rural Indiana was when DeAnna went off to college, but Angel was left behind due to her disability. After age 22, adults with disabilities age out of national education programs in the […]
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March 13, 2024 • 52 mins
Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital […]
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March 6, 2024 • 75 mins
MaKenzie has received a slew of chronic pain and chronic illness diagnoses over the years, including Chiari malformation, lupus, Sjogren’s disease and Hashimoto’s syndrome, but she isn’t focused on her diagnoses. She’s focused on managing the daily impact of her symptoms and the emotional toll this journey has taken. She […]
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February 28, 2024 • 95 mins
For Meresa, one of the hardest parts of living with mast cell activation syndrome (MCAS) is the daily uncertainty. She says, “It’s still such an everyday variable disease. It really sucks a lot of the time. It’s really painful. People don’t understand what it is, they don’t always understand what […]
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February 21, 2024 • 56 mins
This week on the Major Pain podcast, our host Jesse is interviewed for a change! This interview is taken from a recent rheumatoid arthritis summit hosted by Andrea Dunn. She asks Jesse what inspired him to create the Major Pain podcast, inquires about his health journey and recent diagnosis of […]
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February 14, 2024 • 45 mins
Ezra lives with collagenous gastritis (CG), one of the rarest conditions we’ve ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia. Ezra has […]
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February 7, 2024 • 91 mins
Marie’s road to developing pudendal neuralgia is long and complicated. Pudendal neuralgia is a chronic pain condition involving damage to the pudendal nerve, which is the main nerve that branches to the genitals. Marie now lives with constant pain that is worsened by sitting, so she is forced to either […]
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January 31, 2024 • 106 mins
A pituitary adenoma is a tumor on the pituitary gland that secretes prolactin (also called a prolactinoma). For some people these tumors can be harmless and go unnoticed, but for others it can cause severe symptoms. For Andi it caused extreme hormone dysregulation, exhaustion and mental health challenges, including depression, […]
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January 24, 2024 • 61 mins
Mark’s disturbing health problems have been stumping doctors for years. He started having zappy pains in his hands, face and feet, temperature dysregulation, heart rate and dizziness issues. His PCP was quick to blame these symptoms on anxiety, but Mark knew there was something else at work. His gastroenterologist discovered […]
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January 17, 2024 • 50 mins
Cassie sums up her chronic pain situation by saying, “we know there’s something wrong but we can’t put a name to it because the testing is not definitive.” She experiences chronic joint pain, chronic fatigue, brain fog and arthritic damage with no evidence of inflammation on her imaging. Doctors have […]
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January 10, 2024 • 79 mins
Gryph has been living with dissociative identity disorder (DID) since early childhood, having developed 15 distinct identities or ‘alters’. He says, “Many of my alters have been around since the age of 2, so by the time I was diagnosed, they had 20 years of life experiences under their belts.” […]
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January 3, 2024 • 59 mins
Serena has gone to great lengths to uncover the cause of their severe chronic pain. Like many chronic illness patients, they have run into barrier after barrier when seeking care. Serena lives in Tennessee and has been denied for health insurance 5 times. They have also been denied 3 times […]
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December 27, 2023 • 60 mins
Juvenile rheumatoid arthritis refers to an onset of autoimmune arthritis at a young age, which happened to Andrea when she was just 10 years old. She had been experiencing severe TMJ, wrist and knee pain, but doctors did not realize she had juvenile RA throughout her childhood. She was finally […]
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December 13, 2023 • 89 mins
Every time Isobel has a medical test done, she has her fingers crossed that something will come back abnormal. She has been living with flare-ups on and off throughout her life, starting after a severe viral infection when she was 9 years old. Her symptoms include extreme fatigue, dizziness, brain […]
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December 6, 2023 • 80 mins
When Chanda Hinton was 9 years old she suffered a spinal cord injury due to an accidental discharge of a firearm. This moment would forever alter the course of her life, but looking back, Chanda isn’t sure she would change anything. Her work as a disability advocate has altered countless […]
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November 29, 2023 • 68 mins
In 2005 Tracey was in a car crash that completely changed her life. She immediately developed slurred speech and an ice-pick headache right through the center of her brain. At the emergency room she was diagnosed with a concussion and sent home, but things only got worse from there. She […]
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November 22, 2023 • 72 mins
In her early 20s, Kristin’s body started exhibiting changes that she could not explain. She started gaining weight mysteriously, noticing that her hands and face were growing larger. Over the years this mystery intensified, even her tongue and internal organs were growing. Kristin sought help from many doctors, but was […]
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