Living with POTS, HEDS, Rapid Gastric Emptying and More

Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was 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 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…

Caitlin’s Chronic Illness Puzzle: POTS, Spondylolisthesis, Hypermobility, FND and More

Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months 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…

Living with Chronic Migraines, Ehlers-Danlos Syndrome and More

India is a retired nurse living with a complicated collection of health conditions. She was born with hypermobile Ehlers-Danlos syndrome that went undiagnosed most of her life, and has experienced several related comorbidities including bronchiectasis. Her pain situation reached a fever pitch due to a Chiari malformation, where part of Read more…

Fighting Medical Gaslighting while Living with Chronic Illness

Aimée has been experiencing chronic pain and increasingly debilitating neurological symptoms throughout her life. She was first diagnosed with fibromyalgia at just 12 years old, at a time when that diagnosis carried little to no actionable recourse and significant stigma. Due to a lack of helpful doctors in the face Read more…

Living with the EDS Triad: Ehlers-Danlos, POTS and Mast Cell Disease

As a child, Morgan didn’t realize it was unusual to be in constant pain. She thought it was normal for joints to constantly pop out of place, to be hyper sensitive to foods and environmental factors, and to experience constant dizzy spells with risk of fainting. As she got older Read more…