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…

Her Laundry List of Diagnoses Inspired a Children’s Book About Autoimmune Disease

Heather has accumulated an overwhelming number of medical diagnoses, including Sjogren’s disease, vasculitis, SLE lupus, new daily persistent headache disorder, small intestine bacterial overgrowth (SIBO) and endometriosis. At 20 years old her boyfriend (who is now her husband) sat her down to say she was sick and needed to go Read more…

Fiction Writer Emma G. Rose Incorporates Chronic Illness Experience in New Novel

In her new novel On the Bank of Oblivion, author Emma G. Rose explores her own history with chronic illness through the lens of contemporary fantasy. At 16 Emma was diagnosed with chronic fatigue syndrome (CFS), now referred to as myalgic encephalomyelitis (ME). It all started with a tickle in Read more…

Approaching the Two Year Mark Living with Long Covid

Grace first contracted COVID-19 in October of 2020, having a fairly serious infection that almost required hospitalization. She caught COVID again just a month later, likely from a visit to the hospital. These back to back infections seemed to trigger an avalanche of health issues. Throughout 2021 she would be Read more…

Stacy’s Chronic Illness Duo: Hashimoto’s Thyroiditis and Endometriosis

Stacy has been diagnosed with two chronic illnesses, but getting those diagnoses was an uphill battle. In 2019 she started experiencing extreme exhaustion, brain fog and weight fluctuations, but repeated visits to multiple doctors revealed nothing. In her tenacity to uncover the truth she started researching potential tests to request, Read more…

Andi and Jesse’s Adventures with Travel and Covid

Andi and Jesse are back from their month of traveling, but things didn’t quite go as planned. They share stories from their trip to Maine for a wedding, followed by Tahoe where Andi unfortunately came down with covid. Andi shares her frustration with a series of difficult events in her Read more…

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…