The Role of Patient Advocacy in Herpes Awareness and Education
A note on patient advocacy:
Patient advocates are irreplaceable when bringing awareness to herpes stigma, but we cannot rely solely on someone’s experience in lieu of expertise. Here’s why:
Patient advocates, by definition, utilize personal experience to advocate for and on behalf of others living with their condition(s)
Privilege plays a large role in someone’s experience of a herpes diagnosis. Patient advocates have an obligation to maintain an awareness of their privilege in their interactions.
This is especially important in understanding how marginalized populations navigate external supports, healthcare systems, testing, and treatment options as they are often neglected by research.
Patient advocates are a necessity in creating change for others living with herpes, but change ultimately occurs through connection with other disciplines and professionals.
When patient advocates deny or are unaware of their privileges, the lines around one’s advocacy efforts and credibility become blurred.
Supporting others through a herpes diagnosis is much more than having knowledge about the herpes virus, empathizing with feelings of isolation, or finding a go-to disclosure prompt that works for you.
It’s an understanding of collective experiences outside of your own and willingness to collaborate with and learn from others, personally and professionally. It is never a one-person solution.
Ideally, advocates, educators, healthcare professionals, epidemiologists, sex therapists, and the like collaborate, triage patient care, and build off the work of one another to alleviate herpes stigma.
We cannot ethically advocate for someone without an awareness and understanding of how others’ experiences and life circumstances differ from our own.