Jen From My Spoonie Sisters On How RA Led to Medically Induced Pustular Psoriasis

Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That’s exactly how Read more…

Fighting Back Against CFS/ME With Dr. Hoppers

Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn’t until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate Read more…

From Lupus to Fibromyalgia: Kindra’s Evolving Diagnosis

For Kindra, it’s been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on Read more…

Are Scoliosis, Kyphosis and EDS Connected? Billie’s Twisty Tale

In 5th grade Billie’s classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person’s spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was Read more…

Classical EDS, MCAS, POTS, Fibro and More: Maureen’s Complex Journey

Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges. Read more…

Visualizing Chronic Pain: A Conversation with KYRIANNA

KYRIANNA is a watercolor artist based in southern Oregon, who creates striking images that visualize chronic pain and illness. Since these conditions are often invisible, KYRIANNA provides a profound opportunity for her clients to see a representation of their conditions. Her process involves an in-depth interview that she calls a Read more…

Kevin Has A New Diagnosis, and New Insight Into Applying for Disability

This week Kevin returns to the Major Pain podcast to catch us up on his health journey. The big news is that he was recently diagnosed with Ménière’s disease, adding one more diagnosis to his already long list. He was also finally approved for disability, and he discusses this process Read more…

Ali DiGiacomo On Spoonies Being Accused of Using Illness for Likes and Views

A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called ‘Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes – as experts raise concerns Read more…

Living with Hypersomnia: Sunny’s Story

Sunny did not consider her diagnosis as a major pain, but rather a “major inconvenience,” until she realized how affected her daily life was. Since childhood, Sunny battled to stay awake during the day. She experienced sudden waves of drowsiness and her eyelids feeling heavy, which often would not resolve Read more…

Avery’s Acromegaly: “It’s All in Your Head”… but Something Is Actually in My Head!

Avery was gearing up for senior year of college when she began to notice painful changes in her body. Her initial symptoms included difficulty sleeping and intense jaw pain. Avery also began to notice growth in her facial features, hands and feet. She thought these changes could be from another Read more…