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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.
156 Episodes
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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, […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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.” […]
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 […]
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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