Jen’s Half Cents: The Trauma of Advocacy

Author’s note: This blog will not be giving any identifying information, screenshots, or links to provider or advocate comments. As the focus of this blog is a need to acknowledge the traumatic nature of working in public health and advocacy, protecting the identities and personal spaces of these heroes is of the utmost importance.

In April of this year, a friend I’ve worked closely with on a variety of personal and professional levels wrote me: “So…I’ve quit my job and left the field.”

They had spent years working for a health department funded entity serving both urban and rural areas, doing outreach, contact tracing, care and coverage navigation, advocating for clients with providers, for providers with administrative management – the full gamut of public health activity, specifically around HIV and STIs. Last March, they were sidelined to COVID work, face-to-face, often without protective equipment, lacking time off, enough staffing support, and more. Everything everyone else went through as COVID gripped the nation with the most stringent mitigation efforts. Over the summer they would be tasked with pulling “double duty” between COVID contact tracing efforts and HIV and STI work.

This story is not unique.

While higher profile exits from the field of public health have gotten some attention, as evidenced by CNN’s coverage in May on more than 250 public health officials having quit, resigned, been fired, or retired, those that take on the daily tasks of providing care within communities haven’t gained the attention they deserve. In January, the National Coalition of STD Directors published their “Phase III” survey of state STI programs and the findings were startling – every, single published comment discussed the issue of burnout among disease intervention specialists, data managers, and other client-facing staff. As the so-called Delta Variant of SARS-CoV-2 grips the nation in now a noted “fourth wave”, these human resources making the very body of public health haven’t been replenished. Many providers, advocates, community members, survivors, loved ones of those lost to COVID, some elected officials, and those at greatest risk of severe COVID complications or loving those who cannot yet access vaccines have taken to social media to voice their frustration with the state of the nation’s response to COVID-19.

For HIV/AIDS advocates, this isn’t new. We’ve spent four decades being ignored or actively discriminated against, having our stories stolen from us and mutilated in efforts to demonize us, our vulnerabilities and very disease state criminalized – used as justifications for denying us basic freedoms and access to the very care that keeps us and our loved ones alive. We’ve watched promises made, lofty goals announced, and the dollars behind those goals go unused due to lack of flexibility and then usurped to put children in cages and concentration camps, those dollars used to rip children from their parents, sometimes right before their eyes. People living with HIV accessing Ryan White programs are asked to detail to case managers intimate and personal aspects of their lives they may never share with other people. The same case managers who are over worked and underpaid and can’t be provided the supports they need in order to make clients feel like the ears and eyes prying in their lives actually care.

Yet and still, these same voices, these same lives and experiences are those relied upon to move legislators and policy makers, and beg and plead for changes that would reduce barriers to care for us and other people. There is not a single advocate I know, personally, who has not run into a barrier to care or system failure or – frankly – a bigot abusing politics or process who has not turned around and fought with every breath to ensure those harms are ended. “I will do everything I can to make sure no one ever has to go through what I went through.” There is a love in this sentiment that cannot be measured. It fills you up – it fills me up – from your gut to your chest, it becomes the wind at your back and that love inspires and sustains…for a while. That love stands in stark contrast to the politicized and polarized response to COVID-19 mitigation efforts and vaccination campaigns where frustrations run up against conspiracy theories and near sociopathic adherence to contrarian conflict.

We don’t talk about what it is, the personal cost, to retell our stories time and again. We don’t talk about the nature of purposely reengaging our traumas in order to advocate for the world around us. There’s a fear that runs quiet in the background when some decides to change their path or step back from advocacy. That fear often sounds like a hushed phone call, “Am I a bad person for not being up for this?” All that fear compounds with the daily stress of paying bills or commuting or caring for family or going to school so you can be heard with more legitimacy or…or…or….

That piece is the emotional labor of survival.

Advocacy and public health are not for the faint at heart. And….

Those entities, governmental and private, funding care and advocacy, regardless of space – be it oncology, HIV/AIDS, STIs, substance use recovery – need to consider these costs when evaluating awards. When compensation for these stories or “community engagement” often tops at twenty dollars an hour, funders are telling those with the courage and voice to share those stories that our years of trauma – the very expertise of “lived experience” or existing at the intersections making up your consumer base – is worth less than the average cost of your tank of gas. Supporting communities means supporting a living wage, supporting operations costs, supporting expanding staffing, supporting entities with mental health days as part of leave policies. Supporting effective advocacy and efficient public health means supporting the very humanity behind these efforts.