It was a full circle moment, the kind that somehow makes you feel a little bit vindicated. As if the cosmos is admitting that all of the struggles that you and your family have endured is seen and perhaps even has a purpose.
I felt strangely calm.
Surprising, since it was the first time that I was going to be sharing my story as a rare disease parent with a group of medical students. I am extremely grateful to have found Pathways to Trust and to be given this opportunity to speak about my experience as the parent of three children living with Ehlers-Danlos Syndrome who have struggled to access appropriate and supportive care. Our last ten years have been challenging, with months of hospitalizations, surgeries and misdiagnosis. We learned many lessons on our diagnostic Odyssey and quickly realized that our data-driven, risk averse and over specialized healthcare system is not really set up for families like us who have rare conditions, overlapping symptoms, unexpected outcomes and chronic pain.
I was excited to think I might possibly give these future doctors a nugget of real-world insight that could potentially change the way they think about future patients. I felt the weight of responsibility because I knew I was speaking for so many families beyond my own.
I inhaled a deep breath, convincing myself that it was somehow strengthening me with the empowerment not to break emotionally, and to remain grounded as I spoke about our experience. The words that I had often thought about over the last ten years, just poured out of me, slowly and steadily like a cake batter going into the pan. Ugly words. Words like “trust” and “trauma,” “misdiagnosis” and “pain” addressing so many topics that are uncomfortable to speak about in the sanitized world of clinical medicine.
I could see the empathy in their eyes. Their expressions fueled my hope that in some small way, I might be able to make things better for others. Parents with children who come to them for help with physical pain, low quality of life and a confusing array of symptoms that do not immediately make diagnostic sense. Families that live with Ehlers-Danlos Syndrome and other connective tissue diseases that have been historically misunderstood and discounted as a structural problem of hypermobility.
These families need help. These families deserve support. And yet, in spite of a frequency of 1 in 2,500, these are the parents and children who are easily discounted and marginalized because there is no test to measure true pain or how their bodies dysfunction.
Sharing my story felt validating and hopeful, but the best part for me was still to come. I got to introduce the next speaker, a Cincinnati doctor who had changed my son’s trajectory four years earlier because he examined my child with fresh and medically objective eyes. By doing so, this doctor discovered a serious issue that had been overlooked and misdiagnosed. He treated my child and my family with respect and became a pivotal provider in my son’s care.
His curiosity gave us answers and a new plan for treatment, but more importantly, it renewed our hope. As Dr. Goldschneider started his presentation to talk to the medical students that day, he presented new ways to think about and evaluate children experiencing chronic and complex pain. As he spoke, my world felt like it had come full circle.
Education and awareness are the best way to rebuild trust and inspire hope. Talking about what hurts is the first step on a long path to better healthcare.