MCSMN Blog

September 21, 2018

Stepping into Self-Advocacy

By katesheridan

On my first day of 11th grade, I suffered from a cardiac event. My dad called 911 while I focused on trying to breathe. The Emergency Medical Technicians (EMTs) arrived quickly and loaded me into an ambulance. Laying on the stretcher, I hazily remember seeing a firefighter above me. “Nice sneakers," he said, with a grin.

More than a decade ago, I was diagnosed with a complex case of Lyme disease which triggered an autoimmune condition, a cardiac condition, and pain syndrome. Over the first three years, I was referred to more than 30 doctors, given 15 different diagnoses, and was hospitalized 5 times. As the disease progressed and my pain levels became excruciating, the illness began to undermine parts of my identity. I went from being a straight-A student to being unable to read or write; from a competitive athlete to bedridden, and from an extrovert to feeling isolated.

Having a controversial illness like Lyme disease only made the process harder. I was told I was imagining my symptoms, or making up my condition to avoid going to school. I would try and hide my central ports and IV bags so that I could attend social events as a “normal” person—only to become bedridden for weeks after, to recover the spent energy. With impaired brain function, I was exhausted at doctors appointments, trying to remember what changes I needed to share with my health care providers. As my condition worsened and emergency situations became more common, I began to dread the panicked visits to the Emergency Room. The first few visits all saw the same pattern—I was a diagnosis, passed from hand-to-hand until discharge.

Then, when conditions hit a real low, I ordered a pair of oversized, multicolored sneakers. The shoes gave me a talking point with my providers and a reputation in the Emergency Room. With every new diagnosis and treatment, the sneakers became louder: after my first blood transfusion, I ripped out the shoelaces and replaced them with motley cloth scraps. By the time I had lost the ability to run, there was neon paint spattered across the firework designs on the leather.

The sneakers helped providers engage with me as a person. When I wore them, the EMTs, nurses, and doctors treating me would notice them and comment. This would allow me to start a conversation and make jokes about my wild sneaker collection. Suddenly, I was no longer just a patient; I was the goofy kid with the weird sneakers—just like their kid or niece or sibling. This personal connection influenced some important aspects of my care—like taking more time to be gentle while inserting an IV—and some less important things—like getting extra snacks! Doctors were willing to hear my whole story and not just a summary. When I had my shoes, I had my voice, and for the first time, accidentally, I had become an advocate for myself!

The future of medicine seems focused on health technology, robotic surgeries, telemedicine, implants, and transplants…and rightly so. But in my experience, finding simple and meaningful ways to connect can be just as powerful. Eight years after that ambulance ride, my perspective on health care has become more complex, policy-oriented, and data-driven. But I also appreciate that my first steps into the world of health care imprinted me with the knowledge that individualized, personal care will always be at the heart of good medicine.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Kate Sheridan is a patient empowerment advocate, speaker and recent graduate of George Mason University. Kate’s experience as a pediatric chronic patient inspired her to become certified as an Emergency Medical Technician, and to pursue a B.S degree in Health Administration and Policy, with a long-term goal to increase patient empowerment and improve patient outcomes. She is currently pursuing a master’s degree in Comparative Social Policy at the University of Oxford. Find her on Twitter at @kate_sheridan1

 

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