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…

Psoriatic Disease, Small Fiber Neuropathy and More: Angela’s Diagnostic Odyssey

When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a 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…

Living with Systemic Juvenile Idiopathic Arthritis, AKA Still’s Disease

While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how 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…

Demystifying Functional Neurological Disorder: Sydney’s Story

Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney’s symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year Read more…

Kyle Ayers on Turning His ‘Suicide Disease’ Into Stand-Up Comedy

Kyle Ayers is a well-known comedian, famous for his podcast ‘Never Seen It‘ in which comedians re-write a scene from a show or movie they’ve never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was Read more…

Rho’s Chronic Illness Journey: “It’s Been A Long Difficult Fight”

Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, Read more…