Marlene, a 50-year-old divorced mother of three adult children, experienced the life-changing news of being diagnosed with genital herpes. Rebecca was blindsided by the announcement, as was everyone else. A maelstrom of yearning, longing, anger, fear, distrust, concern all formed new questions of friendship and being safe consumed her. Genital herpes is mainly caused by infection with the herpes simplex virus (HSV) type 2. Here in Australia it impacts about 12 to 15 percent of the population. As Marlene navigates her new reality, she discovers that the stigma surrounding herpes is pervasive, leading to silence and shame among those affected.
Like Paige, another woman with the same diagnosis, she has steered clear of sexual partnerships since finding out about her diagnosis. She’s passionate about stopping the shaming of people with herpes. She’s one of the most visible advocates for the importance of having open conversations about the virus. Both women’s experiences underscore the critical need for education about STIs. The hosts highlight the importance of education and the responsibilities that come with knowing about STIs.
The stigma surrounding living with genital herpes makes disclosure and recognition of symptoms even more crucial. Dr. Freedman, a leading expert in STIs, emphasizes that individuals have a duty to inform their partners about their herpes status or take reasonable precautions to protect others.
Understanding Herpes and Its Implications
Genital herpes is most often caused by HSV-2, but HSV-1 can cause genital infections as well. This is the experience of many people with Marlene’s disease who are surprised by their diagnosis, particularly when they do not present with clear symptoms. Marlene’s experience was especially jarring. After suffering from overwhelming fatigue, she was tested and heartbroken when a test came back positive for the virus.
“I just burst out crying, from just shock and I think grief,” – Paige
Marlene had her first outbreak just four months after her diagnosis. Throughout that period, she faced excruciating inquiries concerning her individual life and sex life. Yet she knew almost nothing about the virus going into it. As a naturally curious and concerned individual, she inquired about its causes and what her diagnosis meant for her.
The emotional cost of a herpes diagnosis can be more than the monetary cost. Many people experience feelings of shame and disgust when HSV is quite common. In Australia, close to 80 percent of the population are HSV-1 carriers. The herpes simplex virus, which usually causes cold sores, can lead to genital infections.
“It’s actually really common. No-one chooses to have this,” – Paige
By telling their stories, Marlene and Paige both want to help stop the stigma surrounding herpes. They inspire those around them to see herpes as a minor health issue instead of a deeply personal stigma.
The Importance of Disclosure and Communication
In Dr. Freedman’s words, Disclosure should be fundamental to any approach to the harm done by herpes. When one comes to someone with an obvious outbreak, as he points out, it is your ethical responsibility to tell potential partners for their safety. Then he argues that disclosure shouldn’t be the first thing people do when they meet someone new.
“If you haven’t got an obvious outbreak, but you haven’t disclosed to the person that you’ve got herpes, you should be … using condoms,” – Dr. Freedman
After being diagnosed, Marlene voiced anxieties about explaining her diagnosis to potential partners. The fear that permeates this discussion is something I hear all the time from people who are living with herpes. As for disclosing her condition, here’s what Paige had to say about her approach.
“It might happen that we go to their place, or they come to mine, and then like, when we get into my room, it’s like, ‘Oh, you know, just letting you know this is what I have,’” – Paige
She focuses on empowering herself for these essential conversations.
“And then if they say, ‘Oh, I don’t know if I can do that’, I think then I have to hold myself in that power of going, ‘OK, no worries, maybe like we can just spoon or something,’” – Paige
This kind of proactive STI disclosure communication is a new but increasingly common phenomenon among those with STIs who are seeking to be transparent in close relationships.
The Journey Towards Acceptance
Marlene and Paige’s journeys reveal a common thread: the struggle against societal judgments concerning STIs. They both felt shame upon being diagnosed but are learning to accept themselves.
As Dr. Freedman points out, the initial outbreak of herpes tends to be the worst. While judging the future is hard, he tells patients that subsequent eruptions usually calm down and are less severe. He urges everyone who is impacted by herpes to fight back with information and personal advocacy, rather than giving in to feelings of shame.
“If I see those poor people who are having a really nasty herpes first outbreak, it will never be that bad again,” – Dr. Freedman
Paige goes into great detail about the shame she felt because of not knowing enough about herpes prior to her diagnosis.
“I think it was because I didn’t know much about it … and also, I hate to say it, but … you tell yourself it’s OK for other people,” – Paige
She wants to underline that her condition is not what makes her who she is.
“And it’s also the least interesting thing about me,” – Paige
Both Marlene and Paige are determined to break the silence surrounding herpes and encourage others to seek information and support.
