A Narrative Approach for Your Health Care Team

By Kate Nicoll

As a social worker, I thought I knew how to navigate health care. But then, I was diagnosed with partial transverse myelitis (TM) in 2002. I went home partially paralyzed from the neck down, a neurogenic bladder and bowel, ambulating only with assistance and a power wheelchair – and a mom to four kids. My saying is: ”I went from giving home care as a hospice social worker to receiving home care in twenty-four hours.” I did not get comprehensive care. I went from doctor to doctor, hospital to hospital, trying to get someone to listen and care. Over the past twenty years, I have met some brilliant, wonderful healthcare professionals. I have also met some pompous, condescending, and dismissive providers. I learned that you need to get your care providers to care about your story, you as a person, your family, your life, and your dreams.

Recently, I had a probable recurrence of spinal cord inflammation, perhaps from a resurgence of my Epstein-Barr from the original injury in 2002 or as a reaction to a recent vaccine. I went to one emergency room, unable to empty my bladder and bowel, and an attending neurologist told me that it was “stress” and emotions. I asked him if he had ever heard of autonomic dysfunction and if he would attribute a blood pressure reading of 197/131 and a total shutdown of my bladder and bowel as stress. I advocated, spoke back, and asked informed questions. I even presented journal articles on my phone. Despite all this, I was dismissed, not admitted, and sent home. One of the specialists I had seen for years told me to be more Zen like her other patient with dysautonomia. “She has it much worse than you. She fell down the stairs.” I retorted “can she go to the bathroom?” A week later, a different specialist told me, “you advocate too strongly, and doctors stop listening.” My response: “I am a social worker with a spinal cord injury and dysautonomia. I must speak up strongly for those not listened to – including myself.”