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
Kyle Ayers is a well-known comedian, famous for his podcast ‘Never Seen It‘ in which comedians re-write a scene from a show or movie they’ve never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was […]
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Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, […]
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This week on the Major Pain podcast we speak with Diane Strand, founder of the nonprofit JDS Creative Academy, which offers training and job placement in the entertainment industry to people with disabilities. JDS caters to individuals with a passion for creativity who hope to turn this passion into a […]
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May 22, 2024 • 63 mins
Cianna has been a dancer her whole life, saying “as soon as I could walk I was dancing.” Over the past few years chronic illness has altered her life’s course, and frustratingly taken her away from dance. While it has been difficult to leave her life’s passion behind, Cianna has […]
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May 15, 2024 • 88 mins
Kenny Alhadeff first appeared on the Major Pain podcast 3 years ago, sharing his experiences living in recovery from drug addiction and alcoholism. This year Kenny will celebrate his 40th year of sobriety. Since first appearing on the show Kenny has experienced the most intense chronic pain of his life, […]
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This week on the Major Pain podcast we are joined by NYU Professors and psychoanalysts Dr. Avgi Saketopoulou and Ann Pellegrini to discuss the intersection of trauma and gender, as discussed in their book Gender Without Identity. They propose a new theory of gender development, that gender is something all […]
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May 1, 2024 • 58 mins
Jamie is a social media chronic illness advocate under the handle @LoveWarriorHugs, but her advocacy extends beyond social media. She is an epilepsy ambassador with the National Epilepsy Foundation, and she’s also been involved in successfully lobbying to change pain management laws in Illinois. Her passion for advocacy stems from […]
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April 24, 2024 • 68 mins
Rasheera Dopson, host of the Womanhood & Disability podcast, is an accomplished author, public speaker and advocate spreading her messages of justice, disability empowerment and awareness. She came by this work through her own experience living with two rare syndromes, both caused by her being born about 5 months premature. […]
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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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