By Julie Eller, co-host of the Live Yes! With Arthritis Podcast
In the past three months, people in our country and across the world have experienced so much change. We have worked together by staying isolated at home. We have supported our health care workers by forgoing elective medical procedures, sewing protective masks and even joining those rounds of applause we have heard in the streets. We have come together to stand as a united community, vocally advocating for those at high risk, like the immunocompromised, elderly and people of color who are disproportionately impacted by medical crises like this pandemic. Importantly, we have taken these three months to learn as much as we can about the novel coronavirus. On this week’s episode of the Live Yes! With Arthritis Podcast, co-host Rebecca Gillett and I interview Dr. Kevin Winthrop, and together we get answers to some of the top questions we know have been on your minds. Listen now.
When I think back to March of 2020, I think back to a blur of uncertainty as we rapidly came to understand how heavy COVID-19 would weigh on our country and especially our arthritis community. For a minute there, I remember feeling like the coronavirus might be just another disease we hear about in the news and thinking it would be sad to follow the stories of people impacted. I had no idea how deeply it would reshape our lives, our work, our country and our world.
The weight of COVID-19 started to crystalize for me in early March when the Arthritis Foundation’s stellar advocacy team had to make the difficult decision to shift the Advocacy Leadership Retreat, an in-person event meant to bring more than 100 leaders to Washington, DC, to advocate for the needs of the arthritis community, to a virtual event. In a little over 48 hours, the advocacy team worked together to reinvent an event that took more than a year to plan. This decision was made in the early days of this crisis, before it was commonplace to “go virtual,” when we had far more questions than answers.
While it would be the first of many events to make this necessary shift, I remember wondering if we were overreacting – if we were making a mistake, and if we should just charge forward with this exciting in-person event we had worked so hard on. I am proud that the Arthritis Foundation courageously made the decision to innovate rather than push forward with the event as planned. The decision showed a commitment to our community and to our mission; it would become a rallying cry over the coming months as more difficult choices needed to be made. Shifting to a virtual event was difficult, but the work was made easier by the dedication of our Advocates, who welcomed the change amidst uncertainty because of their commitment to fighting for the best interests of those in the arthritis community.
Shortly after our successful virtual retreat, my boyfriend and I made another difficult decision: to pack our bags and leave our apartment in Washington, DC, to hunker down and shelter in place with family in Tennessee. Ethan and I had so many questions about where we would be the safest, wondering if our city would become a hot spot, and whether we would be scared to navigate a locked-down city on foot (as we don’t own a car). What I remember most was craving answers to all the uncertainties we were facing, grappling with the fear of the unknown and thinking to myself that spending two weeks at home with family would be a welcome comfort during a public health crisis. Little did we know that those two weeks of crisis we anticipated would turn into a fully certified pandemic and nearly three months of quarantining in Tennessee with family.
As I think about what has changed the most since those early days of the coronavirus pandemic, I think about the depth of my uncertainty and all the questions I now have answers to. I know now that our response has not been an overreaction to a disease in the news, but a necessary, community-wide action that has helped mitigate risk and save lives. I know now that those impacted will not be just stories in the news to me but instead they include friends, colleagues and members of my cherished arthritis community. I know now the value of getting validated information in a time when everyone is so hungry for answers and for hope, and the challenges that ensue when misinformation spreads, like the access issues patients experienced when the world became focused on hydroxychloroquine.
I am thankful we have more answers today than we did in early March – and I’m especially thankful to have a platform where I can share some updated information with patients like me, who just want answers. I invite you to listen to our latest episode of the Live Yes! With Arthritis podcast to revisit some old questions about the coronavirus, ask some of the top questions still on patients’ minds and reflect on how much we have learned and changed in the past three months. Tune in today.