Level 10 Pain, the Mayo Clinic, Aphasia and Sarcoidosis: Claudia’s Journey So Far

Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues Read more…

Fiction Writer Emma G. Rose Incorporates Chronic Illness Experience in New Novel

In her new novel On the Bank of Oblivion, author Emma G. Rose explores her own history with chronic illness through the lens of contemporary fantasy. At 16 Emma was diagnosed with chronic fatigue syndrome (CFS), now referred to as myalgic encephalomyelitis (ME). It all started with a tickle in Read more…

Complex Regional Pain Disorder: My Pain is like a Petulant Child

Pris is a 4th generation circus performer and entertainer who has worked in costume design and staged weapon play. She grew up as a very physical child, filling her days with dancing, baseball, basketball and more. She was familiar with the feeling of a normal bone break, and the subsequent Read more…

Finally Diagnosed: Her Genetic Condition Hid in Plain Sight for Decades

When Ashley scheduled an interview for the Major Pain podcast to discuss her chronic illness, she was prepared to talk about living with an undiagnosed disease. But to her shock, just weeks before recording her interview, a rheumatologist officially confirmed a diagnosis. Ashley found herself looking back on her life Read more…

Living with Celiac Disease, Chronic Migraines, Covid Complications, Fibromyalgia and more

Kristin has lived with pain since she was 9 years old, a journey that has taken her through chronic migraines, celiac disease, covid complications and remaining medical mysteries. As a child she would experience tingling pain in her head, often accompanied by visual disturbances, nausea and vomiting. Shortly after these Read more…

The Link Between Childhood Abuse and Endometriosis: A Survivor’s Personal Account

Amanda grew up experiencing constant trauma. Her mother was deeply abusive, to the point that Amanda’s father was given custody at 6 years old. He moved the family to California and joined a religious cult, where Amanda would continue to suffer abuse with nowhere to turn. Having lived through emotional, Read more…

Living with Two Invisible Conditions: Hypermobile Ehlers-Danlos (HEDS) and Autism

Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her Read more…

Living with a Mysterious Seizure Disorder

Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in Read more…

Still Undiagnosed and More Confused than Ever

Jesse’s mystery illness continues to go undiagnosed, and recent liver biopsy results have plunged the situation into even murkier waters. In this episode of the Major Pain podcast he sits down with his partner Andi to discuss the evolving situation. They discuss the challenges of having an undiagnosed and elusive Read more…

Living with POTS and EDS

Zoe’s life changed dramatically at the beginning of 2021. In rapid succession she contracted Covid-19, suffered a concussion, and came down with mono. These three major stressors on her body caused a massive flare of chronic pain, functional difficulty and POTS symptoms (postural orthostatic tachycardia syndrome). At first her doctors Read more…