Recently while driving to work in the morning, I heard some local radio deejays debate the following question: would you rather have sex with a beautiful Hollywood actress (in this case, Halle Berry) and get genital herpes as a result, or stay a virgin for the rest of your life? The immediate answer from two of the three? Virgin. And while the third debated a bit, he too ultimately decided, after a bit of goading, that living life as a virgin was a better option than living life with genital herpes.
Just another example of typical morning radio blather? Perhaps. But it’s also another example of the persistence of the misinformation and stigma that surrounds genital herpes. Today, 25 years since the infamous TIME cover story on herpes, does it really still remain “The Scarlet H?” While we’ve come a long way in terms of understanding transmission, risk reduction, and treatment options, social attitudes have not progressed as quickly as scientific knowledge.
When it comes to straightforward misinformation, the facts are there for those willing to listen and learn. Genital herpes is a severe, painful condition? While more difficult for some than others, in fact the infection is typically so mild that 90 percent of those who have it aren’t even aware of it. Genital herpes is uncommon and restricted to marginal groups? Hardly, since it affects nearly 1 in 4 people of all ages and from all walks of life. Herpes is somehow a mark of promiscuity? Actually, anyone who has sex can contract it (and have no idea, as we’ve just established). But if I had it wouldn’t I know, because I’ve been screened for all sexually transmitted infections (STIs)? Perhaps, if you specifically requested the test, but HSV testing is not necessarily part of routine STI screening.
While scientific knowledge has progressed, public attitudes seem slower to evolve. Why the persistence of such stigma surrounding what is essentially a skin condition, and what can be done about it? While we’ll look at these questions in this article, we don’t necessarily offer any definitive answers here. Rather, we’d like to open the discussion to our readers and solicit your opinions and feedback for discussion in a future issue of The Helper.
What we do know is that social stigma has real consequences: it can discourage people from getting tested; from seeking care and treatment; and from communicating with a partner or even a healthcare provider. Stigma also stands in the way of research, with individuals unwilling to participate in clinical trials and behavioral studies for fear of “what others will think.”
What we don’t necessarily have the answer to is how and when public attitudes will change. Certainly some topics once considered taboo, such as breast or prostate cancer or depression, are now much more openly discussed. So what will it take for herpes to follow suit and for the public perception of the infection to shift?
It’s Just Semantics . . . or Is It?
Certainly, the stigma that surrounds herpes exists in part for the same reason that it does for other sexually transmitted infections-many people still feel uncomfortable discussing issues of sex and sexuality. So while the virus that causes outbreaks in the genital area is more or less the same as the one that causes sores on the mouth, the two are viewed quite differently. As someone said to me recently in a stunned tone, “I don’t have herpes! It’s a cold sore!”
Of course, the location of the infection is the issue, but language plays a role. Not to say that referring to genital herpes as “cold sores” or some other euphemism would necessarily reduce or eliminate stigma, but our language choices can perpetuate it. Even material designed to educate and inform can inadvertently reinforce stigmatizing attitudes and beliefs. Simply put, the way we talk about it matters.
Take for example the emotional issues surrounding a diagnosis. For a rather common and largely benign skin condition, genital herpes carries with it a certain degree of “baggage.” But while the emotional issues that accompany a diagnosis should be addressed, it is important not to overstate them nor assume everyone will respond in the same manner. While some people are “shocked,” “angry,” and “upset,” by an initial diagnosis, words used in some of our own materials, this is hardly the extent of possible emotional reactions. As ASHA’s Senior Researcher Lisa K. Gilbert, PhD states, “Not everyone is angry and miserable. We need to make sure we strike a balance between acknowledging current reactions and the reality of the condition. Once a person has been educated about the virus, and has lived with the infection for some time, they’re likely to have a different emotional outlook.”
On the National Herpes Hotline, awareness of stigmatizing language has led to some changes over the years according to Herpes Resource Center Director Mitch Herndon. One example of this is a move away from the terms “protected” and “unprotected” sex. “Now we talk more in terms of risk reduction. One reason is because it’s simply more accurate; sexual activity by anyone, anywhere, regardless if whether one has herpes, involves some level of risk.” Herndon noted. But at the same time, though, it addresses the possibility of stigma; that if you contract herpes through “unprotected” sex that you share some burden of responsibility-and shame.
Another conscious shift is toward a discussion of the “infection” rather than speaking of someone as “infected.” “The use of the word ‘infected’ can be stigmatizing.” Herndon suggests. “Why do we often hear that someone is ‘infected’ with herpes but not with the flu or a cold, for example? It’s not just the facts about herpes that are important, it’s the way we deliver them as well.”
True—it’s not just the words we use but how we deliver the message. While we believe that the facts about herpes have the power to alleviate stigmatizing beliefs and attitudes, these same facts, presented differently, can also serve to reinforce them. You might be interested or even surprised to learn that almost 1 in 4 people in the U.S. have genital herpes, but should you be “shocked” or “alarmed” by this? Even education and prevention messages can reinforce stigma in their presentation of the facts. There’s a difference between “1 in 4” and “1 in 4!! You could be next!” Both offering information, and crafting appropriate messages, play an important role in the reduction of stigma.
Consequences for Research
Indeed, some of Dr. Gilbert’s current research involves just that— developing appropriate messages for healthcare providers to deliver to newly diagnosed genital herpes patients to address both the medical and emotional issues following a diagnosis. Certainly improving the education and counseling offered to patients up front can help with the initial adjustment and arm the patient with information to address social stigma as well. To assess how effective these messages are, though, follow-up surveys need to be completed with both providers and patients-and this is where the problem of stigma interferes. The physicians involved in the study report the same problem recruiting patients as researchers attempting to recruit volunteers for a herpes vaccine clinical trial in 2002—potential participants report not wanting to be contacted about or involved in anything that has to do with herpes.
Dr. Julie Downs at the Center for Risk Perception and Communication at Carnegie Mellon University faced t he same difficulties in her work. Dr. Downs planned a study on the link between the stigma associated with genital herpes and behavior, with the understanding that stigma can stand in the way of open communication with sexual partners. She and her colleagues conducted interviews with three groups of people: people newly diagnosed, those who had received a diagnosis that was at least two years old, and a group that reported never having herpes (as far as they knew). They found that those without herpes and those who were newly diagnosed expressed concerns that they would be judged harshly if others knew of their infection. Those who had been living with herpes longer, however, “replaced these general, other-centered fears with more nuanced perceptions of personal worth and circumstances,” Downs indicated.
But while Downs and her colleagues are still analyzing their results, they found they were unable to complete at least one part of their study—a planned intervention aimed at reducing the psychological burden of stigma. Why? They too had a difficult time recruiting volunteers as a result of, well, this same stigma. For this same reason the researchers were forced to conduct interviews over the phone when volunteers were reluctant to come in for faceto-face interviews, even though they reassured the participants that no one was aware of the topic studied. “It was humbling how much the stigma itself really interfered with doing the research,” Downs commented.
Stigma doesn’t just interfere with advances in research, of course. It can interfere in the everyday lives and relationships of those living with genital herpes. It often stands in the way of finding support among friends and family, of pursuing new relationships, and of sharing open and honest experiences to educate others to reshape the public perception of the infection.
“The root cause of the fear in talking to others about genital herpes, no matter how you tackle the issue, boils down to one thing-the stigma,” says Karen, an HSV advocate from Vancouver who is working to raise public awareness by participating in such projects as a national marketing campaign and a documentary film on herpes. In discussing her willingness to come forward to educate others, she notes, “I’m the kind of person who believes that if you are going to complain, you’d better stand up.” But she also acknowledges how difficult this can be, and understands how fear of stigma forces many to lend support only anonymously or confidentially.
Having lived with genital herpes for 15 years, Karen has a balanced perspective on the infection. But she credits her initial misdiagnosis as playing a role in allowing her to manage her first outbreak with a positive attitude. When dealing with the physical discomfort of the outbreak, she says “My roommate at the time and I had a laugh about it, because it was just a typical ‘female predicament.’ Had I not been misdiagnosed and knew at the time it was herpes, I might not have been laughing.” As she observes, “It’s not the virus people are afraid of catching, it’s the stigma.”
Raising public awareness about herpes through media coverage and public education campaigns is key to reducing the stigma, Karen believes. Making the public at large aware of some basic facts, even as basic the fact that common cold sores are actually herpes, could go a long way toward promoting understanding.
“If people really knew what this virus was, they wouldn’t be so afraid,” she notes. With an infection so benign that ninety percent aren’t aware that they have it, “if you remove the stigma from the equation you have a better perspective on it.” For her part, Karen hopes more individuals and organizations take an active role in promoting awareness, “So we can change the face of this virus.”
What’s Your Take?
At ASHA, we are certainly aware of the consequences of social stigma as well as some steps to take to confront it to change perceptions about genital herpes. A number of suggestions emerged from ASHA’s Herpes Stigma Colloquium in October 2003, for example: train healthcare providers in ways to better educate and counsel their patients; ensure appropriate and accurate media coverage; and empower patients by providing them with accurate and positive messages about herpes, including the fact that the infection is treatable and manageable.
Indeed, a study published in the August 2003 issue of Sexually Transmitted Infections looking at the emotional and psychological responses of newly diagnosed patients revealed that among the factors that helped participants cope with their diagnosis included having basic information about herpes to both reduce perceived stigma and lessen feelings of isolation.
We know that offering accurate information is an important role that the Herpes Resource Center and The Helper play in empowering people to confront stigma. In addition, we issue positive messages to the media and pursue behavioral research to the same end. But no one organization or group or individual can take on the issue—addressing stigma is a shared responsibility.
On that note, we’d like to ask our readers your ideas and suggestions on stigma to share in a feature issue. While we’re open to your thoughts, you can consider the following questions:
- How much if at all do you find yourself isolated from sources of support by fear of stigma?
- Has your perception of the infection, and of the stigma surrounding it, changed since you were first diagnosed?
- What role do you feel you do or can play as in individual in working toward the goal of reducing stigma?
- If you’ve participated (or would consider participating) in a research study or clinical trial, what influenced your decision to do so?
- How important is broader media coverage in raising public awareness?
While I'm glad to have the opportunity to pose these questions to our readers, I admit that I did miss the chance to ask a question or two of those morning deejays: Are you sure at least one of you doesn't have genital herpes already? Surely there must be at least one sound engineer or producer in that studio with you...did I mention 1 out of 4?