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…

A Diagnosis from Every Category: Ankylosing Spondylitis, Vestibular Migraines, Bipolar Disorder and More

Kevin has been on a diagnostic roller coaster over the past few years. He was working in a management position at a museum when he started having trouble walking, difficulty straightening up and intense pain in his feet. He also developed uveitis in his eyes, a painful inflammatory condition that Read more…

Pauline’s Quest for an MCAS Diagnosis

Everybody has mast cells in their body, as they play a critical role in allergic response. Mast cells release mediators to attack allergens, but can sometimes overreact when no allergen is present. This is the case for Pauline, who was recently diagnosed with mast cell activation syndrome (MCAS). Though her Read more…

Level 10 Pain, the Mayo Clinic, Aphasia and Sarcoidosis: Claudia’s Journey So Far

Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues Read more…

Living with Hyperhidrosis, the Excessive Sweating Disease

Kristen lives with a rarely talked about disease called hyperhidrosis, which causes excessive sweating from the moment she wakes up to the moment she goes to bed. This includes the usual spots people sweat such as under arms or the low back, but also places you wouldn’t expect such as 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…

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…

Living with POTS, HEDS, Rapid Gastric Emptying and More

Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was 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…

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…