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…

Living with Type 1 Gaucher Disease

Adrianna was born with type 1 Gaucher Disease, a genetic condition in which an enzyme is missing from the body. This leads to a build up of fatty cells that can cause damage throughout the body. For Adrianna, this has led to intense bone pain, low platelet count, anemia, extreme Read more…

Living with Stickler Syndrome, RLS, Blindness and More

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second 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…

Back to Back Post Viral Illnesses from Epstein Barr Reactivation and COVID-19

In September of 2020 Jennifer came down with a serious illness. Naturally she assumed she had COVID, but repeated tests kept coming back negative. Her illness lasted an entire month, and she didn’t return to full health afterwards. She continued to have extreme fatigue, body aches, sore throat and headache. Read more…

Recovering from Chronic Fatigue/Myalgic Encephalomyelitis with the Post Viral Podcast

Lindsay and Stu met in an online recovery program for myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). This is a debilitating disease that encompasses a wide range of symptoms including brain fog, headaches, post exertion malaise, and bone weary exhaustion. While many people (including doctors) often Read more…

Complex Regional Pain Disorder: My Pain is like a Petulant Child

Pris is a 4th generation circus performer and entertainer who has worked in costume design and staged weapon play. She grew up as a very physical child, filling her days with dancing, baseball, basketball and more. She was familiar with the feeling of a normal bone break, and the subsequent Read more…