Chronic Illness Author and Advocate Ilana Jacqueline Shares Her Rare Disease Journey

As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. 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…

Our One Year Anniversary! Catching Up with Previous Guests

This week we are celebrating the one year anniversary of the Major Pain podcast, kicking off the second season of the show by catching up with previous guests! India and Brooke each have a new diagnosis that offers some clarity, while still leaving big picture questions unanswered. Cammie has found 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…

Shawna

Living with Diffuse Scleroderma, Post Stem Cell Transplant

Shawna has been through more than most 29 year olds. She has diffuse scleroderma, also known as systemic sclerosis, a disease characterized by hardening of the skin and potentially life-threatening effects to internal organs. While this disease normally effects older individuals, Shawna started noticing symptoms at just 14 years old. Read more…