Melissa Faulkner An Invitation to Come Alongside Reflections on Chronic Illness, Healing, and Patient Safety By Melissa Faulkner, RN MSN This is my written submission for the World Patient Safety Day storytelling project. I live with mast cell activation syndrome (MCAS), hypermobile Ehlers-Danlos syndrome (hEDS), and dysautonomia. Although I have lived with these conditions all my life, they became profoundly disabling around 2013–2014. It took seven years from becoming severely ill to receive the diagnoses I suspected all along. When my health collapsed, I lost my nursing career,...

Maaike Asselbergs I am 76. I have several chronic conditions, including heart arrythmias since early childhood, celiac disease, essential tremor disorder, and congenital GI dysfunction, which necessitated a colostomy in my forties. I am scheduled for major surgery to repair extensive abdominal herniation, resect my bowel and to create a new colostomy. After waiting seven months, I recently saw a new cardiologist. To make the most of the time, I prepared a one-page summary of relevant medical data. Her approach conveyed that she saw me as an anxious old woman. Questions or information I...

Eileen and Daniel Daniel was diagnosed with Myalgic Encephalomyelitis* (ME) at 19 years of age. After a series of travel vaccines (including a live vaccine) and  what Eileen (mother)  eventually discovered just before Daniel died at 21 years old (2012),that his physical body was still compromised by a fresh water parasite that he ingested from drinking water from a high school camping trip a couple of years before.  One of his classmates, as a joke, purposely gave Daniel the untreated water that contained Giardia Lamblia. When Daniel was diagnosed he  was also transitioning from...