It's Time to End The Stigma Around Herpes

January 30th 2016

Of all sexually transmitted diseases, genital herpes carries the greatest social stigma after HIV, according to a 2007 poll about relationships. The stigma around this disease is greater than that for gonorrhea, mental illness, obesity, substance abuse, and cancer.

"I noticed a pattern in myself," Adrial Dale, 36, told NPR about his herpes diagnosis and its effect on him. "I was still judging myself for having herpes. I was convinced that this was pretty much a death sentence to my love life."

Dale's experience may sound familiar to many people. But medical professionals say the stigma is not deserved. More on that later.

I had a friend who went to a clinic in Hollywood three years ago to see if the painful bumps the friend developed "down there" were what they dreaded most: herpes. My friend was distraught that herpes could be the diagnosis, thinking that it would be the end of sex and dating because it's incurable, marking them as dirty, sexually promiscuous, or permanently undesirable.

And it turned out the friend did have it. A simple swab test revealed an HSV-1 infection, or oral herpes, on their genitals — marking them as a member of a club that already comprises as much as two-thirds of the global population under age 50, according to a recent World Health Organization study on HSV-1. (An estimated one in six Americans have genital herpes caused by HSV-2.)

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Most of us have probably been exposed to herpes. So why the fuss?

Given the disease's prevalence, the stigma around it is baffling, particularly since many medical professionals aren't even that concerned about herpes.

My friend asked the doctor questions about disclosure of the infection to future sexual partners: Should they tell them? What was their responsibility? The answer shocked me and indicated how overblown the stigma around herpes actually is.

According to my friend, the doctor pointed out that standard STD panels don't even include HSV-1 or HSV-2, and the doctor added that a herpes infection for the average person, although incurable, is nothing to worry about.

It's only dangerous when you're having sex with someone who is HIV-positive. Otherwise, genital herpes usually means occasional outbreaks of manageable sores that improve over time, occurring less frequently and with less itching and pain.

As many as 90 percent of people with HSV-2 don't even know they have it, the doctor told us, because they have no symptoms and are never tested.

As for HSV-1, oral herpes, it tends to manifest as largely harmless cold sores.

In other words, herpes is a manageable, although sometimes chronic, skin condition to which most people have already been exposed. Disclosure is a matter of personal preference and comfort, so long as an infection isn't active, the doctor told my friend.

Does a health education professional agree?

"I do, actually," Carla Jackson, a health educator at Cal Poly Pomona, told ATTN:. "The seriousness behind [herpes] has gone away because there are better treatments available, and we've figured out that pretty much everyone has been exposed and some people simply react to the virus more than others."

"I think what she said was completely spot on," Jackson continued.

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This made me think back to another hand-holding medical appointment I attended with a different friend who was diagnosed with herpes in 2004. That doctor shamed my friend for testing positive for herpes, telling her that she would never be able to bear her own children because of it, which, it turns out, is quite inaccurate.

"I think that's the more common experience, unfortunately," Jackson said of the difference between the two doctors. "And I think that's done a lot to drive the stigma around herpes or any STD."

Jackson also emphasized that the way medical professionals handle a herpes diagnosis influences how patients respond to getting the disease and how society views it:

"We need more medical providers [...] to be honest with people. I think a lot of the time when someone has an outbreak, they're scared, and they go to a medical provider who has their own biases or who hasn't keep up with current research. They communicate not necessarily false information but not the whole picture, either. Making sure that providers are educated and communicating in a way that not stigmatizing is really important."

Whether you have HSV or you know someone who does — chances are that at least one of those is true — there are steps you can take to reduce the stigma, too.

"We don't get ashamed of ourselves when we get a cold, and it should be the same for an STD, including herpes," Jackson said. "People are sexually active. Viruses and other organisms can be transferred at that time. What's important instead is making sure that we take charge of our sexual health."

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