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.”
Because of this, I changed to a completely different hospital system. The first neurologist wondered if there was a “functional overlay,” meaning a somatic component to how I walked and moved. As a clinician, I reiterated that I understood the body-brain connection but pointed out fatigue, dehydration, or a full bladder can impact how I present. I challenged her to consider how my day-to-day life is, living with the anxiety and fear of incontinence, retention, the decline of ambulation, overall functional collapse of sympathetic activation, and autonomic overload with stroke-like blood pressures. She was kind and compassionate but stuck to her ground. However, at least there was a discussion and a process to my healthcare story.
Then I struck three gold-mine doctors with different specialties, who started the visit with, “You have a very complicated history, but tell me your story.” All three, on totally different days, listened for two hours. In a few weeks, I had had three doctors who listened more than anyone had since my reoccurrence began in April of this year. One doctor shared, “My mother told me to listen to stories, it is an important part of my culture, and I am here to listen, then help with a plan.” And he has. It has been a bumpy ride. There have been some beautiful and scary moments, and now a functional decline and perhaps complete autonomic failure of my digestive tract that a neurologist had minimized by calling it stress. I have a few tidbits to share: never let a healthcare professional not appreciate and honor your narrative, ask questions and make them care. This is your life, your story, and your body living with a rare disease. Make them take notice.
Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.
