James Stanley Miller is a graduate of Harvard University. He completed an honors degree in History and Science. Mr. Miller’s honor thesis “Defining Herpes: Pharmaceutical Companies, Physicians, and Patients in the Post-Antiviral Era” examined how pharmaceutical companies, media, and patients assisted in shaping views of the infection. For our anniversary issue, Mr. Miller graciously agreed to provide us with a synopsis of his research that may be of interest to our readers.

Herpes’ identity as a stigmatized disease did not originate in the 1980s, in fact this association was a gradual process. In 1976, one journalist had already termed genital herpes the “fastest-spreading venereal disease in the world,” while Harry Nelson, the Los Angeles Times medical writer, began referring to HSV-2 as the “virus of love,”apparently a common practice at the time.¹

In 1978, another Times headline declared genital herpes the “Venereal Disease of New Morality” and a “Sexual Sore Spot That’s Spreading.” The article went on to describe the disease “roaring through parts of Orange County like an unwanted dinner guest,” and emphasized its severity by describing two patients suffering significantly due to herpes, both requiring hospitalization.²

The increasing stigma and psychosocial burden associated with genital herpes in the late 1970s and early 1980s prompted the creation of support groups, herpes dating services, and herpes social groups. In 1979, The American Social Health Association (ASHA) established a Herpes Resource Center (HRC) and a large network of support groups. The HRC operated a herpes hotline and published The Helper, a newsletter for HELP members (HELP refers to both the national organization and the local support groups; HELP is an acronym for “Herpetics Engaged in Living Productively” ).³ Thus, ASHA served multiple roles–information source for individuals and the support groups with herpes and as a voice in the public sphere for people with herpes.

Both the national HELP program and individual support group moderators explicitly positioned themselves in opposition to the efforts of the media to define herpes as a dreadful and isolating disease. However, the potential for herpes support groups and social groups to widen the separation between people with herpes and “normal society” proved problematic–even as they worked to fight this definition of disease and its pernicious effects on people with herpes, they ran the risk of creating a social out-group and thus reinforcing existing stigma.

From the outset, the HRC encountered a great deal of concern about genital herpes—in its first few months of existence, before its support groups or newsletter were in operation, it received 25,000 inquires, and a few months later, when Ann Landers mentioned ASHA in a column it received another 22,000 inquiries.⁴ At first, HELP staff members coordinated the local chapters of HELP; as they became more established, volunteer organizers took over, but the groups remained affiliated with and accredited by the national HELP staff.⁵ HELP aimed to provide both education and a respite from stigma, as well as advocacy on behalf of those with genital herpes.

Since its founding, HELP/HRC staff and local support group moderators have sought to counteract media portrayals and redefine the disease for their members. In 1980, during the height of herpes stigma, a front-page article in The Helper offered advice to readers on how to tell a partner, emphasizing that they should not be guided by media portrayals in this conversation, and should in fact be prepared to contradict common assumptions propagated by the media. The article stressed that one should “NEVER use the world incurable,” nor such words as “nightmare, malignant, herpetic, lesion, or venereal.” HELP staff also discussed the controllability of herpes, saying, “DON’T forget to emphasize how preventable herpes is…let’s not be guilty of focusing on so narrow a slice of the entire issue that we distort it.” Finally, the article declared that, contrary to media portrayals, herpes was not an all-consuming, self-defining disease: “ALWAYS keep in mind that herpes…is only one small part of who and what you are (i.e., you are not a virus).”⁶

Similarly, readers wrote in to challenge the idea of herpes as an all-encompassing physical and personal defect. As one support group coordinator put it, “herpes is not good or bad. It is. I have herpes. It is unfortunate that I have herpes. It is also unfortunate that I have poor vision, bad knees, and a car with 90,000 miles on it.”⁷ One support group member expressed that the group had allowed him to move beyond the idea that herpes dominated his life and his identity: “The group made me feel less unique. It put things into perspective. It helped make me feel that I’m not a herpie–I’m a Tom.”⁸

However, the relationship between support groups and this “herpes identity” referred to by the member above has proved complex. While many people with herpes found (and continue to find) support groups essential in escaping from the stigma of herpes, others have suggested that these groups inadvertently contributed to the stigma by creating a separate group, and group identity, apart from society. Historian Allan Brandt has critiqued ASHA for the choice of the HELP acronym, arguing, “first, the whole notion of a noun which identifies the infected individual by the disease itself–herpetic–contributes to the stigma the infection carries…the patient is the disease. Second, the notion of ‘Living Productively’ reinforces the stigma; why would there be any assumption to the contrary, if not for the prevailing views of these individuals and their morality.”⁹

Though reaching somewhat different conclusions than Brandt, ASHA has also confronted this issue by declining to endorse herpes dating services and maintaining a strict separation from herpes dating groups. They argued that “it’s vital to stress to those newly infected that a person with HSV need not be paired with someone else who carries the virus. Rather, those of us with HSV infections should be developing the skills and resources to make our lives full and satisfying and to overcome gracefully whatever remains of society’s prejudices on the subject.”¹⁰

The Internet greatly expanded the possibilities for these groups, making it far easier to organize and publicize herpes support groups and herpes dating services. However, this success renewed concerns about contributing to the stigma of the disease or creating a social out-group. Gayla McCord, founder of the Southern Indiana HELP group, stressed that “socializing with people who have genital herpes is one step in the healing process. But remember, having an STD doesn’t define you as a person…if you put yourself only on STD dating sites, you’re restricting yourself to 25 percent of the population.”¹¹ A popular herpes dating site, MPwH (Meet People with Herpes), however, pins the responsibility not on the person with herpes but on an uncaring and moralizing public: “Herpes and HPV don’t define you, but judgmental people will make judgmental decisions. Here, you don’t need to be judged due to something you can’t control.”¹²

Since Brandt’s writing, the term “herpetic” has fallen out of favor, but the labeling of people with herpes has not disappeared. One term that had replaced it is a simple “H”—a construction used by a number of “H dating” sites such as CharlotteH.com and AtlantaHClub.com, as well as in a recent issue of The Helper.¹³ People with herpes who use non-herpes dating sites also have the option of putting the digits 437737 (the telephone keypad spelling of herpes) in their listing, as a sort of secret code to alert other people with herpes who happen to browse their listing or who search for 437737 on the site.¹⁴ These naming constructions would perhaps be even more objectionable to Brandt—not only do they give a label to people with herpes, but they also portray herpes as a disease that is, or should be, hidden by making it an unspeakable word.

The “H” label can be viewed as either an echo of the Scarlet H and a refusal to utter the word herpes or as a reclaiming and redeployment of a stigmatizing term (something akin to the reclaiming of “queer” in the gay community). Such practices resist simple characterization—while both these naming constructs and the need for herpes dating sites certainly represent a symptom of continued stigma, the “H” label is often used in a lighthearted way, complicating its portrayal as an internalization of stigma.

This question of a “herpes identity,” as well as the role of support groups in both creating and destabilizing the concept, resists simple characterization. ASHA’s tireless efforts have provided indubitable benefits to thousands of individuals living with herpes, and the support group model has been established as a central part of disease management. Yet, after 30 years of HELP groups, concerns about the unintended consequences of support groups remain worth considering. Though I do not presume to offer any sort of resolution to this issue here, it is my hope that this research will encourage readers to consider how they might reconceptualize this idea of a “herpes identity.”