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, became largely housebound, and relied on my family and disability supports. The hardest part was not simply the uncertainty—it was feeling unseen. I experienced multiple misdiagnoses and serious complications and later read medical notes that reduced much of my suffering to something “in my mind.” The clinicians who helped most were not necessarily those with every answer, but those who stayed present, listened, and were willing to face uncertainty with me.

Dominique Hurley – ” The Journey – all the way home to my Self”

Uncertainty is part of healthcare. Abandonment does not have to be.

One of the greatest lessons I have learned has come from tending my edible landscape. When a plant struggles, I may first feel frustrated. Then I become curious about the conditions in which it is trying to survive. I wonder what might change if we approached people the same way. Rather than asking only, “What is wrong?” perhaps we might also ask, “What are the conditions in which this person is trying to survive?” Presence creates the space for that curiosity, and from there, genuine partnership—and healing—can begin.