With so many questions swirling around the internet about herpes, there are many people affected by the virus who want to clear the air—with the facts.
One of them is Emily Depasse, 26, of Philadelphia: Two months after receiving her bachelor's degree in gender and sex studies—surprise—Emily was diagnosed with herpes simplex virus 2 (HSV-2), the most common cause of genital herpes (HSV-1, the common cause of cold sores around the mouth, can also cause genital herpes).
"Herpes happened to me, the person who's supposed to really know about sex," says Depasse, a patient advocate here at HealthCentral. "My self-esteem declined, and I thought, 'Who will love me now?' It reflected the stigma I internalized, and yet I know it can happen to anyone."
Now Depasse is pursuing her master's degree in human sexuality and social work, and has made it her goal to help others navigate the complicated world of sex and STIs. She also actively participates in the Herpes Activists Networking to Dismantle Stigma (HANDS) project.
"We don't know how to talk about herpes, and language really matters," says Depasse, speaking especially to fellow millennials. "We may be communicating more, but not necessarily better—after all, our generation is famous for ghosting." (That’s when someone halts communication without warning or reason.)
Depasse shares similar philosophies with Courtney Brame, 30, of St. Louis, the creator and host of the nonprofit podcast "Something Positive for Positive People," which is dedicated to setting the record straight on what it’s like to live with herpes. Diagnosed with HSV-2 seven years ago, he shares his uplifting messages for those with a positive diagnosis via his show, now at 43,000+ downloads.
"Herpes jokes won't stop if people allow them to continue," Brame says. "We all know someone who has herpes. It only takes one interaction with someone who has it, who's shedding, to be susceptible. I think no one maliciously gives someone herpes. Condoms don't completely prevent it, and taking medication isn't a sure thing either." And yet, Brame observes, the condition is still shrouded in stigma.
"People who are open about it usually haven't passed it on to another partner, due to that clarity, openness, and transparency," he says. "Get to that place of acceptance with yourself, and others will naturally accept you, too."
So, You've Got Questions About Herpes
How do we get to a place where herpes isn’t this hush-hush topic surrounded by so much misinformation? Again, it all comes down to the facts: Getting out accurate information about this oh-so-common virus.
To help, we came up with 10 burning questions to ask an internationally recognized herpes expert. Meet Anna Wald, M.D., who co-authored "Managing Herpes: Living & Loving with HSV" with Charles Ebel, a book recommended by the American Sexual Health Association. Dr. Wald is also a professor of medicine in allergy and infectious diseases, epidemiology, and laboratory medicine at the University of Washington School of Medicine and School of Public Health.
In short, Dr. Wald knows her stuff. Here’s what she had to say about herpes.
Can I Have Herpes and Not Know It?
Yes, you can have herpes and have no clue. That’s because people with the virus (HSV-1 or HSV-2) may have mild or infrequent symptoms they don't necessarily associate with this infection, says Dr. Wald. Symptoms can mimic a yeast infection, a spider bite, or a bladder infection, or it can just feel like you rode your bicycle too much, she says.
A Simple Lab Test Can Confirm Whether I Have Herpes, Right?
"Well, not exactly," Dr. Wald says. The diagnosis made from sampling a sore or lesion is usually reliable, but blood tests for HSV antibodies (these appear in your blood when your body has fought an infection) aren't always accurate. And more widespread testing isn't recommended partly because the tests for antibodies just aren't that good.
"People send me emails asking questions about herpes," says Dr. Wald. "I always first ask them, 'Do you have a diagnosis, and how was it established?' When they send me blood test results that are 'low positive,' I often recommend additional testing since about 50% do not confirm as positive [in a follow-up test]."
The gold-standard test is the University of Washington HSV Western blot, she says, and people send samples to confirm the virus. "We don't like people thinking they have HSV-2 if they don't," Dr. Wald says.
What's a 'Typical' Genital Herpes Outbreak Like?
What makes this tricky is there isn't really a "typical" outbreak, but there are some things to keep an eye out for. For example: "You may have what are called prodromal symptoms before the actual outbreak, like tingling in the genital area or back of the thigh, or pain in your genital area," she says. "You could have a localized sore, which would be an outbreak."
The first or primary episode of herpes is typically the most severe one you’ll ever have, sometimes with flu-like symptoms such as body aches, fever, chills, swollen lymph nodes, pain while urinating, and also multiple sores in the genital area. Later episodes are less severe and may resolve more quickly, with sores usually in one place. They can be so mild they're not even noticed, Dr. Wald says.
Will the Herpes Virus Ever Leave My Body?
Herpes is one of those viruses that stay in the body once it's acquired, with reactivation causing recurrent symptoms. HSV belongs to a large family of herpes viruses that includes Epstein-Barr virus and varicella-zoster, which causes chickenpox and shingles. All of these viruses usually hang out in the body forever once you contract them.
"All can cause chronic infections because they're clever and have evolved different ways to escape the immune system," Dr. Wald says.
How Upset Should I Be About This, Really?
A herpes diagnosis can cause panic, fear, anger, and even depression—and a lot of that comes down to how you think others will perceive you for having the virus. "I think the biggest problem is the need to disclose to your partners that you have herpes," Dr. Wald says.
Disclosure is important because you can transmit the virus even without an outbreak, when the virus is present on genital skin (called asymptomatic shedding). Taking a daily antiviral pill—acyclovir or valacyclovir—reduces risk of shedding by 70%, but transmission is reduced by only 50%.
"Consider that if you treat an HIV infection, current drugs reduce the risk of transmission by 100%," says Dr. Wald. She'd like to see more investment in finding good herpes drugs, since herpes is present in 12% of Americans.
Herpes stigma is also real, she says. "Even physicians have a hard time talking about herpes. You can't make jokes about HIV, but people make jokes about herpes. I really don't get it."
Do I Need to Tell Past or Future Partners I Have Herpes?
"It's difficult both ways, whether you say 'You gave it to me,' or 'I may have given it to you,'" says Dr. Wald.
Think you infected someone? It's fair game to consider telling them, and generally, with a new partner, you should tell them before you have sex—it's about trust. Many STI activists say disclosure is simply the right thing to do.
With intimacy comes the presumption that you're putting that person at risk, so allow them the autonomy to make a choice about whether or not to take that risk, she says.
"If you don't tell, they could think you're withholding information pertinent to them. What would you want someone to do with you?" says Dr. Wald.
Not sure how to actually go about telling someone your herpes status? Depasse has got some excellent tips on how to tackle these daunting conversations.
Do I Have to Stay on Medication Forever?
To avoid recurrent episodes and reduce the risk of transmission to partners, you can consider regular or daily medication. But that’s not the only option. "Some people only take antivirals when outbreaks occur," she says. Talk to your doctor about what may be the best option for you.
Can I Still Have a Baby if I Have Herpes?
Yes! Women with herpes can go on to have perfectly healthy pregnancies. However, there are certain precautions you may need to take—especially if you are pregnant when you first contract the virus.
"For women who acquire herpes during pregnancy, the highest risk is for their baby since the mother has no immune response [built up]," Dr. Wald says. A mom without antibodies who acquires herpes late in pregnancy can put her baby at risk of neonatal herpes, which can be dangerous. Thankfully, there are precautions you and your doctor can take during labor and delivery to reduce the changes of transmission.
But a mother who had had herpes for longer and has built up more antibodies to fight the virus will pass on that protection to the baby, so the risk that you’ll transmit the virus to your baby in this case is rare, as long as you are not having an active outbreak at the time of delivery. Women who have genital herpes are generally advised to take an antiviral medication during the last 4 weeks of pregnancy, because this dramatically reduces the risk of an outbreak at the time of delivery. Talk to your prenatal care provider about this early on in your pregnancy so that you can make a plan together.
I've Heard There's a Link Between Herpes and Dementia. Is That True?
Some research has found an association between the herpes virus and the risk of developing dementia later in life, but it’s important to know there’s no evidence that there’s a cause-and-effect relationship. "The association has been mainly with HSV-1, or oral herpes, and we really don't know the whole story about this yet in terms of research," Dr. Wald says.
Do I Need to Tell Other Health Care Providers I Have Herpes?
Even if your OB/GYN or family doc already knows your herpes status, it can be helpful to tell other health care professionals in your life about it, too.
For example, maybe you've scheduled a cosmetic skin-resurfacing procedure. "Providers give antiviral drugs to prevent herpes outbreaks that can result from that," says Dr. Wald. Your doctors can help you more if they know all the facts about your health.
The Bottom Line
Remember that among infectious diseases, only the common cold surpasses STIs in the number of people affected. And herpes is one of the most common. You’re not alone, and you can learn to manage it—physically and emotionally.
"After all, people in all walks of life do have sex," Dr. Wald says. And there’s no shame in that.
See more helpful articles:
HSV-1 vs. HSV-2: What’s the Difference Between the Herpes Viruses?
How to Take Care of Your Mental Health After a Herpes Diagnosis
Alternative Herpes Treatments: What Works, What Doesn't