In April 2019, I shared my story of being diagnosed with genital herpes with the world. As cheesy as it might sound, I believed my story was worth sharing if it helped just one person. Three years later, over 51,000 page views, and hundreds of emails later, I can definitively say sharing something so personal and vulnerable was worth it.
When I was diagnosed in 2015, I had already been in the field of HIV/STIs for more than 5 years. I was well-informed. I knew herpes is common. CDC estimated 572,000 new infections in 2018 putting herpes on par with the number of cases of gonorrhea that year. I was also aware of the stigma and shame associated with herpes. What I did not know is just how deep that stigma and shame is felt, and just how severely lacking resources are for those of us living with herpes.
My first outbreak was horrible. My doctor didn’t explain what was happening or what I could expect. I didn’t even get one of those herpes or STI educational pamphlets. Instead, I was left to my own devices and Doctor Google to figure out what was happening to my body. The doctor just told me to go to the hospital if my fever spiked.
I learned through the many emails I received after my first blog post that I was not alone. Clinicians aren’t explaining test results, transmission, prevention, treatment, or partner notification to people diagnosed with herpes. People aren’t being counseled on how to have fulfilling lives or to care for their mental health after diagnosis. A herpes diagnosis is treated as trivial, leaving many people feeling empty and worthless.
Here we are 7 years after my diagnosis, and we still face many of the same issues when it comes to herpes, and STIs in general. Recently, I went to a new doctor for my annual physical. I requested STI testing as part of my checkup. The doctor literally gasped and asked if I was concerned about something. I immediately felt embarrassed even though there was absolutely no reason to be. She whispered, “I see you have a history of herpes, but are you worried about something else?”
First, I don’t have a “history” of herpes. I have herpes. Second, worried or not, STI testing should be considered a part of normal health care, the same way she planned on doing a lipid panel or checking my vitamin D. Third, there’s no reason to whisper, STIs and sex are not big secrets. So, if STIs are common and many of us live with herpes, why is it that we are still faced with the same stigma and lack of resources when asking for basic sexual health services?
Even now, doctors are still unwilling to test for herpes, some cite mental health concerns and the fact that there’s no cure for herpes while others cite the issue of available tests. CDC does not recommend herpes testing for most people without symptoms because of the limits of a herpes blood test and the possibility of a wrong test result. Dr. Christine Johnston from the University of Washington provided a great overview of the 2021 herpes testing and treatment guidelines here.
STIs receive less attention and resources than HIV and Herpes lags way behind the both of them. I can put on my work hat and talk all day about the systemic needs: we need a better infrastructure to provide sexual health services, we need more funding for STD programs, and we need to tackle disparities. But my experience living with herpes and hearing from so many others who do tells me that even that is not enough. We need to tap into the compassion and empathy that are so central to our field and work to make herpes and people with herpes a higher priority.