“If people had all the info, it wouldn’t be funny anymore,” Lemons said. “You have to figure, if indeed the stat is one in four, and you’re telling a joke at a party where there are 20 people, there are probably a couple people there who are not calling you out, but whose feelings are hurt.”
Lemons approaches her romantic life pragmatically: “If you don’t like it, don’t date me,” she’ll say to guys. Lemons was married and her then-husband considered and researched the condition before agreeing to date her. She never gave it to him, since they used condoms, took medicine, and avoided sexual contact during her outbreaks—which for her usually occur on her back and waistline.
Not every guy Lemons dated has been cool with it, though. She always discloses the condition on the second date, after realizing she likes the guy enough to go out again. One guy Lemons dated said he was okay with her herpes, but it became obvious after the first time they had sex that he was inspecting her genitals and “disguising it as foreplay,” Lemons said.
“I finally asked, ‘Find what you were looking for?’” Lemons said. “I was a little angry and hurt and he was really embarrassed. He did admit that he was looking for signs based on what he'd read on the Internet… It was obvious he wasn't ready for a sexual relationship with me.”
Others have dealt with their diagnoses much more harshly than Lemons. An entire spectrum of diagnosis responses can be found in a Topix.com forum that was posted in 2009 and still receives comments to this day. The boy who posted it, then 16, was having trouble accepting his diagnosis and was looking for advice. The next five years of responses include people sharing advice and their own stories, as well as people threatening to spread the disease or saying it’s a curse from God for sinful promiscuity. One girl asked, “What’s the point of living?” Many expressed a desire to be loved and accepted and the fear that they’ll never experience those joys again. Some couldn’t accept the permanence of it. One girl waited until marriage to have sex and got it from her husband and another got it after being raped.
Dr. Christopher Lewis, a family medicine doctor in the Austin, Texas area, has diagnosed genital herpes many times and has seen a variety of responses from patients, ranging from “it makes sense” to “my life is over.” Denial and anger are at the top of the list of initial responses.
“It could be a very confusing time period for them,” Lewis said. “They start thinking back to all the sex partners they had to see who they could’ve gotten it from. Then there’s a level of fear and guilt that ‘Maybe I gave it to someone else and don’t realize it.’ Then they begin thinking of uncomfortable conversations with people they’ll have to have and whether they’ll pass it along to the next person.”
There are many dating sites for people with genital herpes, a Herpes Resource Center Hotline (for counseling and information) and in-person and online support groups. Aimee Wood, a psychotherapist in Philadelphia, has been running one of these support groups since fall 2011.
Every other week, between six and 10 people crowd in a room with Wood to discuss the trials and tribulations of their herpes diagnosis. Topics range from how to respond when hit with a herpes joke (give the facts if you don’t want to out yourself, Wood advises them) to forgiving the person who gave it to you (though very few know who they got it from). Disclosure is a frequent topic of discussion in the group.
“We discuss the pros and cons of disclosing too soon versus too late, and it’s clear that there’s a fine line between waiting until there’s a little bit of a rapport so they can see you as a person, and having sex,” Wood said.
Wood’s patients rarely have issues when disclosing to family and friends. One girl’s father struggled to accept it and would make snarky comments and even blame her for having it. But nine times out of 10, Wood said, friends and family are supportive and sympathetic. The most common struggle among her patients is navigating romantic situations (which many delay or avoid altogether).
Another common struggle among her patients is maintaining their sense of self-worth.
“We do a self-esteem exercise with a crumpled $20 bill, where I ask clients to go around the room and beat it, write on it, and stomp on it, while still keeping it intact,” Wood said. “Then I ask them how much it’s worth. Still $20, they’ll say.’”
All of this insecurity, discouragement, rejection, tears, anger, counseling, suicidal tendencies, humiliation, shame, and isolation is caused by the stigma of a skin condition that usually doesn’t show up most or even all of the year and can be contracted after having protected sex one time. Can the stigma of genital herpes really survive the facts? Peckham and Lemons don’t think so.