Queer women share what it's like to live with herpes in a heteronormative world
Trigger warning: This article discusses rape.
At age 25, Sarah*, a bisexual, cisgender woman, walked into her local sexual health clinic to be tested for sexually transmitted infections (STIs). After leaving an abusive relationship three years prior, she finally found the courage to start dating again. From her experience with Planned Parenthood, Sarah knew that herpes is not included on standard STI screening panels, so she requested to be tested. A week after the test, Sarah received a call from her doctor notifying her that she tested positive for genital herpes and the human papillomavirus (HPV).
The dual diagnosis rekindled feelings that Sarah had buried from her old relationship. “The rape consumed me,” she shared. In addition to reliving the shame from her past trauma, Sarah now feared rejection from both men and women because of the social stigmas surrounding her infections. “Not only did I believe men would not want me, but there sure as hell wouldn’t be any women willing to touch me, especially because lesbian sex is a lot more intimate in ways,” she said.
Sarah’s mention of “lesbian sex” is important. When people hear the word “sex,” their minds usually wander to penetrative, penis-in-vagina (PiV) sex between heterosexual partners. This heteronormative expectation (or the assumption of heterosexual relationships and behaviors) is common in health care settings, too. When providers inquire about our sex lives, our sexual identities may or may not be on the checklist, and that matters.
In a world where health care guidelines assume that PiV sex reigns supreme, it is easy to see how difficult it is for queer women to navigate safer sex with their partners—especially when one partner tests positive for genital herpes. Most medical professionals receive less than 10 hours of human sexuality education during their graduate training and are often unprepared to help their queer patients navigate safer sex. It’s no secret that women are afraid of getting tested for STIs, but for queer women, the fear is much greater. Medical professionals’ lack of inclusive knowledge and awareness about queer sex not only leads to fear among queer women of disclosing their identities, but also inadequate and non-affirming guidance when it comes to partnered sex.
Morgan, a 23-year-old woman who identifies somewhere between gay and bisexual, shared that when she received her positive genital herpes diagnosis at age 18, her “[original] doctor was judgmental and completely unhelpful.” Morgan maintained her relationship with the woman from whom she contracted herpes for four years because of a fear that no one else would ever love her. Over time, Morgan found a doctor she could trust and began to trust herself in new relationships, too. Although her current doctor “has tried his best” to give her “advice on managing same-sex relationships while having HSV [herpes simplex virus], he admitted that [he] doesn’t know of any research…that gives clear-cut advice” to this population. Morgan said that her doctor’s biggest shortcoming is that “he is really only trained in heterosexual care.”
The Centers for Disease Control and Prevention (CDC) considers women who have sex with women and transgender women as “special populations,” but notes “few data are available on the risk for [STIs] conferred between women.” Despite this community’s specialized needs, prominent sexual health organizations assume that heteronormative care is a universal solution to preventing the transmission of herpes between partners. The current CDC guidelines recommend a combination of condoms (assuming penetrative sex), suppressive antiviral therapy, and communication with sexual partners. The CDC also recommends that folks with genital herpes avoid sexual contact with multiple partners, which is not a realistic recommendation for those who identify as polyamorous. Plus, even though both the CDC and the American Sexual Health Association recommend that herpes-positive folks discuss navigating sexual relationships with their health care providers, the lack of awareness and limited research on queer women’s experiences with genital herpes make this recommendation difficult to follow.
There are no current research studies dedicated to queer women’s experiences of genital herpes or transmission rates between same-sex partners. Herpes is a common skin infection that presents orally, genitally, or, more commonly, with no symptoms at all. Herpes is caused by the herpes simplex virus, which is a member of the same virus family that hosts chicken pox, mono, and shingles. There are two types of HSV: HSV-1 and HSV-2. No matter which type someone contracts, or where it presents on the body, both HSV-1 and HSV-2 present with more similarities than differences. HSV-2 is more often associated with genital herpes, but in rare cases can present orally. HSV-1 can present orally or genitally with rates of genital HSV-1 on the rise.
Neha*, a 23-year-old Indian, bisexual, cisgender woman, described a diagnosis story with significantly more direct shame from her health care providers. “At some point, [the nurse’s] questions about my sexual history got more pervasive and judgmental,” she shared. Neha felt so overcome with emotion in the exam room that she started crying uncontrollably. Now, she says, sharing her story has helped her realize how herpes has negatively impacted her hookups and long-term relationships, but it’s also been a gift in one big way: her disclosure helps “filter shitty people out.”
Despite these queer women’s successes in navigating their relationships post-herpes diagnosis, most resorted to external help from internet research, therapy, and online support groups to fill in the remaining gaps. Sexual relationships, whether monogamous or polyamorous, are available to queer women after a herpes diagnosis. As long as there are adequate conversations about consent, disclosure, boundaries, sexual health and education, pleasurable sex (defined as you wish) is possible for queer women with herpes. However, while resources outside the examination room provide comfort, queer women should be extended the same level of care and guidance as cisgender, heterosexual folks. Accepting a lack of research or guidelines is not enough—it’s time for medical schools, curriculums, and those in the health care industry to make a meaningful, inclusive change.
*Names have been changed to protect confidentiality.