So you’ve just been diagnosed with genital herpes. First of all — welcome to the club. If you’re anything like me, when my gynecologist gave me the news two years ago, you may be frantically googling your symptoms and shedding a few tears (okay, a lot of tears), worrying about how your next love interest will react.
Take a breath. You’re not alone.
In fact, around 527,000 people in the U.S. get the diagnosis every year. Regardless of whether you’re experiencing symptoms, lack of education and scant media representation makes it challenging to navigate next steps. Here’s my advice on what to do after a positive diagnosis.
1. Educate yourself.
Since 19 states practice abstinence-only sex education, it’s possible that your herpes knowledge base consists only of fear-mongering slideshows and stories of painful blisters. It’s time to replace these messages with basic herpes facts.
There are two strains.
You may have heard about “above the belt” (HSV-1) and “below the belt” (HSV-2) herpes diagnoses. The first mostly manifests as cold sores, while the second is typically seen as genital sores. Increasingly, however, medical professionals are moving away from those simplifications, says Dr. Jillian Carmichael, a virologist at the Icahn School of Medicine at Mount Sinai in New York. Each strain requires different treatments, but we can’t be sure that location alone tells us which virus is responsible for an infection.
As an example, HSV-2 is spread via genital-to-genital contact. The Centers for Disease Control and Prevention (CDC) notes its cold sore counterpart, HSV-1, can be transmitted through oral sex — and can cause genital herpes. Your doctor may order an STI blood test to confirm the infection is present, but a swab test of an outbreak lesion is the gold standard for an HSV diagnosis.
Many people have herpes and don’t know.
When educating his patients, Dr. Kevin Ard, director of the Sexual Health Clinic at Massachusetts General Hospital in Boston, emphasizes how common that herpes is. “The majority of Americans have HSV-1, and about 1 in 5 Americans have HSV-2,” he says. “If you look at any crowd of people, most people have one form of HSV.”
The CDC does not recommend providers test patients for herpes if they don’t have symptoms, so it isn’t included in most STI panels. This lack of routine HSV screening is a big part of why it’s so common.
“While the risk of HSV transmission is higher with visible lesions, asymptomatic transmission does occur,” Carmichael says. “A person can transmit the virus to someone else without ever knowing they were infected.”
For those who end up showing symptoms (there’s no way yet to predict who will or won’t), the first outbreak is usually the roughest, often lasting a few weeks. However, over time, the body becomes accustomed to the infection, and outbreaks become milder and less frequent. “There’s a lot of variation in how often people have outbreaks,” says Ard. “Some people never have an outbreak again after the first one.”
There’s no cure for herpes… yet.
While researchers have floated potential vaccines, nothing has been FDA-approved yet. HSV-1 and HSV-2 are in their own category as STIs, but they’re just two of the many herpesviruses out there. For instance, chickenpox and shingles are caused by a herpesvirus, varicella-zoster.This family of viruses also acts similarly in the body.
“Once you are infected with a herpesvirus, you’re infected for life,” Carmichael says. “HSV is very sneaky and establishes latency, aka a permanent infection, in neuronal (nervous system) cells.”
2. Affirm your self-worth.
Even in increasingly sex-positive 2022, a shameful stigma remains around STIs. Gynecologist and author Dr. Jen Gunter called them “one of the last taboos.”
If you notice yourself feeling shame, disgust or other unpleasant emotions post-diagnosis, it can help to remember that this stigma has been drilled into you from the outside for years. It means nothing about your own value.
Carmichael recommends talking to a therapist or joining herpes-positive communities online. I have also utilized other resources, like writer Ella Dawson’s 2016 TED Talk “STIs aren’t a consequence. They’re inevitable.” I’ve also found comfort in Instagram accounts like Courtney Brame’s; he runs the nonprofit Something Positive for Positive People, which helps normalize the virus and provides mental health support.
3. Practice disclosing.
If you’re actively dating or seeking future sexual partners, doctors encourage you to disclose your status with them.
This can seem intimidating, especially if you’re worried about rejection. As with other fear-inducing activities, it helps to practice. Whether that means disclosing to nonsexual partners like friends or family, to strangers in a support group or even to your dog as rehearsal (like me), it gets less scary over time.
Discussions of STIs shouldn’t be a one-way street. You can invite dialogue by simply stating, “Let’s talk about STI statuses. I have tested positive for genital herpes. Here’s what it means for sex. What about you?”
By having this discussion, you are demonstrating care for your partners and their right to informed consent. Future partners are lucky to have you. You’ll also probably find that how you open up matters; if you present the news calmly, people will typically mirror you.
4. Develop a herpes management plan.
Although herpes is not curable, it is manageable. Over time, it could have as much effect on your life as the occasional pimple.
Typically, when you’re first diagnosed, you might be prescribed valacyclovir (Valtrex), which suppresses the virus. While some people take medication every day to prevent outbreaks and reduce transmission risk, others take it as needed to stop an existing outbreak.
Ard makes sure his newly diagnosed patients get access to valacyclovir immediately. “The earlier they take it, the better,” he says. “If they find they’re having to use that outbreak-focused medicine very often, or if severe outbreaks interfere with their life, we talk about using a lower dose of medication consistently to prevent outbreaks from happening.”
People who are immunocompromised are more likely to encounter frequent outbreaks and may benefit from daily, preventive medication. If you’re pregnant, a doctor can help you come up with a plan to avoid any risks to your baby.
As you move forward after your diagnosis, remember that you aren’t alone. As I’ve become more open about my herpes status, I’ve connected more with other herpes-positive folks, educated others and slowly chipped away at my own internalized stigma.
Herpes is common. It’s manageable. And you’re still the person and partner you were before you contracted it. You’ve got this.