Disclosure: Disclosure(s): No financial relationships with ineligible companies to disclose
Tonya Horton, Rutgers University, Cherry Hill, NJ
Background/Purpose: In 2017, I went from exercising daily to hardly able to walk due to severe knee pain. My primary care doctor ordered x-rays and referred me to an orthopedist. When the orthopedist entered the exam room, she said that she was surprised to see me because my x-rays showed the knees of a 70 year old woman. I was diagnosed with osteoarthritis (OA) in both knees and would need a knee replacement. It was recommended that I take ibuprofen, go to physical therapy and lose weight. I decided to get bariatric surgery. I underwent a battery of tests in preparation, which led to the discovery of a large polyp and possible cancer. I had a right hemicolectomy to remove my appendix and portions of my small and large intestines. Following surgery, I experienced immense back pain. To treat the pain, I was given ibuprofen and a heating pad. Following my hospital discharge, my back pain progressed to spasms, and eventually, arm and chest spasms. A trip to the ER, revealed that my lung had collapsed during surgery and I was re-admitted. It wasn't until a pulmonary follow-up that I learned my lung was punctured during surgery and the back pain was a primary symptom. According to the pulmonologist, the doctors should have known this.
Intervention: "The doctors should have known." That phrase took me back to my OA diagnosis and my doctor's comment that she didn't expect to see me. My OA shouldn't have been a surprise to her. OA disproportionately impacts women — especially women of color over 40. It isn't uncommon for a Black woman like me to develop OA. I assumed the many stories of health disparities among Black women I'd read and heard wouldn't happen to me. That was not the case, I had the same experiences I'd read about. These experiences led to my interest in researching health disparities. My research entitled, Mitigating Disparities in Health Care for Black Women: An Analysis of Diversity, Equity and Inclusion in the Curriculum Frameworks of New Jersey Medical Schools, led me to focus my energy on health equity. I do this as a Patient Advocate with the Arthritis Foundation. The most impactful experience I had was facilitating Diversity, Equity and Inclusion (DEI) Roundtables in three different regions. These discussions bought patients, community members and health care providers together to share ideas and experiences. A common theme in these sessions was the lack of access to high quality health care ranging from provider location to level of communication to how pain was managed.
Maintenance: Because of my experiences as a patient advocate, I became a better advocate for myself. I now realize that my doctor is not the only source of information on how to manage my pain. My medication options are limited due to allergies, so I've learned complementary methods of pain management such as meditation and yoga.
Quality of Life: Five years later, my life is different. In addition to small tweaks, I have made big lifestyle changes. Even still, I am grateful for my diagnosis. It led to a potentially lifesaving surgery and to my living a fuller, more purposeful life. Navigating the health care system led to my life's work of ending systemic inequities. By sharing my story, I hope both patients and health care providers will learn best practices to enhance their experiences with each other.
