Bekah’s Chronic Illness Was Misdiagnosed As Anxiety for Years

Bekah’s mysterious illness kicked into full gear when they were 14 years old. While cooking food one day they suddenly became extremely hot, fell to the floor and realized they were too weak to get back up. They were overcome by strange neurological sensations, feeling like their arm didn’t belong Read more…

Living with Multi-Generational Ehlers-Danlos Syndrome

Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the 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…

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…