Taking Control of My Arthritis Through Advocacy
On my very first day at the Arthritis Foundation, my new team told me they leave the office every day knowing the work they do genuinely changes lives. I joined the Foundation fresh out of my undergraduate education as an intern on the advocacy team in Washington, DC. At the time, I thought I would spend 10 weeks deepening my understanding of public health and policy at an organization that was near and dear to my heart. Little did I know that my experience advocating for arthritis that summer would transform how I felt about my disease and change the trajectory of my career. In the latest episode of the Live Yes! With Arthritis podcast, Rebecca and I talk with Anna Hyde, vice president of advocacy and access at the Arthritis Foundation, about the transformative power of sharing our stories and breaking down barriers to care.
When I joined the Arthritis Foundation, I was someone who did my best to live invisibly with arthritis. I took measures to conceal that part of my identity — striving instead to present myself as someone unburdened by chronic illness and sharing that part of myself only with those in my closest inner circle. My arthritis had shaped my worldview in many ways. I dedicated my studies to public health education with the goal of helping people live healthier lives. But while my arthritis motivated me to pursue a career focused on health, I never expected my patient experience to become central to that path. Joining the team at the Foundation, I naively thought I could maintain this compartmentalized approach to my diagnosis. I wanted to work for and give back to this community, but I didn’t plan on my story becoming an outward-facing part of my early career.
It all changed for me on a swampy summer day on Capitol Hill when I had an opportunity to shadow Anna, our podcast guest and one of my strongest mentors, as she talked with lawmakers about the critical shortage of pediatric rheumatologists across the nation. We talked with a handful of offices about a proposed policy that could increase the number of providers pursuing pediatric subspecialities like rheumatology and the dramatic impact that early access to care has for children living with juvenile rheumatic conditions. I hadn’t anticipated that I would do much more than share a folder of leave-behind materials with the staff, but then a legislative aide asked us about the real-life costs constituents face due to the provider shortage.
I found myself compelled to share my own experience: the pain and swelling that turned my 7-year-old life upside down; our pursuit of a diagnosis that took more than two years and countless appointments to get; the damage done by my unmitigated disease; and finally, the answers that a pediatric rheumatologist swiftly shared with my family. The impact was immediate, and the problem came into focus for the legislative aides, as did our proposed solution. Sharing my personal story that day dramatically altered the dynamic of the meeting, my perspective on arthritis and the trajectory of my career.
Through advocacy, my arthritis shifted from a source of trauma and pain to an experience I could share to advance a common good. My disease became something that was a present part of my life, rather than something closeted and concealed. Joining the advocacy team at the Arthritis Foundation transformed my perspective on my disease. It was no longer a source of weakness that had taken something away from me, but instead something that I could take control of. Since that day, I’ve been able to explore the many ways patient stories and perspectives can transform health care. I’ve been an advocate, grassroots organizer, podcaster and patient engagement expert. I have gotten to claim an identity that did not hide any part of my life away, and instead live visibly with my disease. And all the while, that advocacy has powered meaningful patient-centered changes in health care and empowered other patients to raise their voices along the way.
I know that advocacy has had a similar impact on my co-host Rebecca. She is a fierce advocate, both federally and locally. Read more about her story here. It was so special for the two of us to record the latest episode of the Live Yes! With Arthritis podcast and reflect on how deeply advocacy has changed our perspectives of our disease. I hope you listen in to hear about some of the ways patient stories fuel our advocacy agenda, the advancements our advocacy team has made and how you can get started in advocacy yourself. Tune in today!