Herpes: The Truth Behind the Health-Related Stigma

Herpes activists, including myself, talk extensively about the existing stereotypes and stigmas associated with carrying genital herpes. These associated slights and slurs could accumulate in perpetuity, but exist without a tangible definition. When I think of herpes stigma, I immediately move towards words and phrases like: dirty, diseased, disgusting, “deserved it,” slut, whore, unworthy, unloveable, at fault, gross. When I looked in the mirror after my diagnosis, I did not feel that my identity reflected any of those words, but I still felt an innate sense of shame and sorrow towards myself and my future.

What Is Stigma?
For those of us who have received a positive genital herpes diagnosis, we know what stigma feels like. We know the extra weight that we feel burdened to carry. The uncertainty of how to disclose to current and potential partners. The insecurity and lack of love we hold for ourselves. Stigma exists, as “an attribute that is deeply discrediting” and reduces one “from a whole and usual person to a tainted and discounted one” (Goffman, 1963, p. 3). Stigma, to some degree, affects everyone. I often find myself comparing my herpes diagnosis as another chapter in my story. Stories are a mark of the human experience. Some we publicize on social media, like new jobs and outings with friends—the happier moments. Other chapters remain more closeted from public view. Current culture dictates a consistently positive social media presence and attitude which is neither realistic to maintain nor reflective of our identities.

Before I publicized my herpes diagnosis in December 2015, I lived within the shadow of perceived genital herpes stigma. Perceived stigma, the experience of shame and embarrassment, is not exclusive to those who test seropositive for genital herpes. Maybe your shadow is the loss of a loved one, depression or anxiety, bullying, in an identity, or another story’s unspoken truth. People struggle with the impact of stigma each day and may live in fear of encountering the stigma in real life. Enacted stigma includes overt rejection, social rejection, or in some cases, physical assaults. Both perceived and enacted stigmas are relatable experiences. Although my friends and family may not be able to relate to my experience with genital herpes, we can certainly find common ground and understanding in the root of our emotions.

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Health-Related Stigma
In order to deconstruct herpes stigma, it is essential to narrow its definition and define examples of perceived and enacted stigma as it relates to herpes simplex. According to Stringer & Baker (2018), “health-related stigma is defined as status lost and discrimination informed by negative attitudes and stereotypes based on health related conditions” (p. 5). The perceived genital herpes stigma includes the laundry list of words provided at the beginning of this post. The innate feeling of being dirty, diseased, and unworthy of love. The fear of rejection from potential partners because of their positive status. Enacted genital herpes stigma includes the movie lines and jokes that poke fun at herpes, the individuals and groups that enjoin perceived stigma in conversation with friends and comments on social media, those that reject and shame potential partners because of genital herpes without consideration, knowledge, or research of what the virus is and its risks, and the medical and educational environments that do not offer an appropriate, inclusive, or realistic learning space for comprehensive sex education. These systems work together to perpetuate this health-related stigma, which unfortunately does not stop here.

Genital herpes stigma is considered to be discreditable, meaning that it cannot be readily observed from someone through appearance alone (which reflects the herpes virus itself, as one cannot tell that someone has or does not have herpes just by looking at their genitals) without disclosure. Stringer & Baker assert that those with such a discreditable stigma, like genital herpes stigma, typically fear disclosure and develop defense mechanisms in order to avoid perceived and enacted stigmas. Those with genital herpes may (and often do) avoid sexual encounters, conversations about safe sex and sexual histories, and even avoid treatment from professionals as a means to avoid stigma.

How Do We Combat This?
Conversations
Despite how perceived and enacted genital herpes stigma represent genital herpes as an isolating infection, we all likely know someone with at least one strain of herpes simplex virus (HSV). Everyone is capable of standing up to genital herpes stigma, especially if we each make an effort to educate ourselves about the basics. Here are a few broad examples of how to confront enacted stigma:

Enactor: [At lunch room] Don’t sleep with her, I hear that she’s got the gift that
keeps on giving...

Confronter: Are you talking about herpes? Actually, it’s really not that funny. A lot of
people have it. Herpes is also the same virus that is responsible for cold sores and is
in the same virus family as chicken pox and mono. Roughly two-thirds of the world
has some strain of herpes simplex, it’s more common than you think. Someone at our
table likely has one strain of it.

Enactor: My STD test results came back. Clean! Thank God I don’t have herpes.
Confronter: I’m happy to hear that you are practicing safe sex and taking
responsibility for your health, but fun fact! Did you know that herpes is not included
in a standard STD panel?
Enactor: What? I asked to be tested for everything?! This is bullshit!
Confronter: Yeah, I know. I didn’t know either until I did some research. Current
guidelines do not recommend testing for herpes unless there are symptoms present.
If you still want to be tested for herpes, you can request an IGG blood test from your
doctor, but they may be hesitant if you don’t have symptoms.

Confronter: I have something that I want to tell you before things get heated…
Enactor: Go ahead. It’s not like you have herpes or something, LOL.
Confronter: Actually, I do. I was diagnosed last year.
Enactor: Oh my God. I’m so sorry. I don’t know what to say…
Confronter: Not many know how to respond. It’s a lot more common than people
realize. When I found out I felt really alone, but after some research, I learned just
how common it is. I feel a lot better about it now.
Enactor: Really? So can you still have sex with people?
Confronter: Yep! I am on prescription antivirals. I avoid engaging in sexual acts
when I have an outbreak to protect my partners. Antivirals along with condoms
decrease the potential for transmission, but herpes is spread through skin-to-skin
contact, so there is still a possibility that my partners may contract it. I understand
you might need time to think about it, so if you want to know of additional
resources let me know.
Enactor: You actually seem like you know your stuff. You know more about herpes
than my sex ed teacher did, ha!
Confronter: Thanks! So, now it's your turn. When was your last STD test?

In a perfect world, these confrontations end in our favor—one small step towards dismantling the stigma! Unfortunately, it’s best to be prepared that not everyone will be open to having their beliefs challenged—even sex educators and medical professionals.

Inclusivity of Care
There is, sadly, little research or guidance on how to care for transgender individuals who contract genital herpes. Though disappointing, this does not come as much of a surprise given that most sex education and medical programs focus on the basis of heterosexual relationships, cisgender identities, and penis-in-vagina (PIV) penetration. The Center for Excellence for Transgender Health dedicates a page to STI guidelines for transgender people. The Centers for Disease Control and Prevention (CDC) does include transgender men and women as special populations, but does not give specific guidelines or interventions for STD panels, instead relying on physicians’ knowledge of behavior and anatomy, which may or may not be well-informed about transgender care. Further research and education is necessary to better care for this population and create a safe space for their sexual health care and understanding.

Sex Education
It’s easy to say that we want more comprehensive sex education in America, but what does that look like when it comes to sexually transmitted infections like genital herpes? Whether at speaking engagements, or during class presentations, I always include an overview of the stigma prior to delving into what the virus is and how it functions. I poll my audience for what they know or have heard about herpes (which typically results in the laundry list of terms). When structuring my presentations, acknowledging genital herpes stigma head-on is one way to both address and combat it. After discussing the labels of perceived stigma, I transition into the reality of how those words impacted me and my identity when I was diagnosed, and how they impact so many others, too. My disclosure in these scenarios also works to address enacted genital herpes stigma. These students and classmates share what they know (or think they know) about herpes, and may be sharing their internal belief systems. I have yet to receive a negative confrontation in-person, but I do prepare myself for it.

  A slide from my recent reproductive biology presentation.

A slide from my recent reproductive biology presentation.

What Can You Do to Help?
Stories gain traction through being told. While public disclosure may not be for everyone, there is a story to tell about genital herpes stigma—the truth.

References
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
Stringer, K. L. & Baker, E. H. (2018). Stigma as a barrier to substance abuse treatment among those with unmet need: An analysis of parenthood and marital status. Journal of Family Issues, 39(1), 3-27.