“I thought I had Herpes for seven months: The overstigmatized public health clusterfuck that is HSV-2”
This is a post from someone who wishes to remain unnamed, about their experiences of having, or believing that they had genital herpes. I am myself a carrier of HSV2. I am very public and open about my status. I have largely been protected by some privilege that allows me to carry this condition without it having affected my life so much, and thus I talk about it often and wear it on my sleeve in an attempt to break the stigma. After living with this for years now, I’d posit that one of the most damaging aspects of HSV2, is not the breakouts, but the harmful way those with the virus are treated by others.
It is not, of course, as easy for everyone to be this open, and my hope is that writing about it might start that dialogue that will bring this era of HSV stigmatization to an end. Whilst the relief of finding out that one is not a carrier (as per this story) must be immense, for me the lesson here, is that we need to stop panicking about this relatively harmless and extremely common virus, that, with two vaccines underway, will likely be eliminated in our lifetimes regardless.
- Zarinah
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I thought I had Herpes for seven months: The overstigmatized public health clusterfuck that is HSV-2
STDs are the kind of thing that happen to other people — until they happen to you.
I’ve always thought, perhaps naively, that with a bit of conscientiousness and some positive thinking, I could avoid contracting an STD. I’m a man who has sex with men, almost never penetrative, and didn’t see my sexual behavior as carrying too much of a risk.
This is the story of the time I thought I had Herpes for seven months, only to learn that I didn’t, and what I learned along the way about how backwards our culture addresses this condition.
The warning
One day, I received a text message from a past hookup. He had tested positive for Chlamydia and warned that I may have been exposed and should be tested. It didn’t seem like a huge deal to me — Chlamydia can be cured with a brief course of antibiotics — but he was having a rough time telling everyone he’d slept with, one of whom responded with a ton of anger. “No sweat,” I replied, and went online to schedule an STD test.
I prefer taking charge of my own health when a doctor isn’t strictly required, so I signed up for a test on stdtestexpress.com, checking the box for each STD. Within an hour or so, I was at a Quest Diagnostics getting my blood drawn. And in a few short days, I received an email with my results.
It was a beautiful Saturday around noon, and I was about to walk into a friend’s house to begin a packed and exciting day. Just before walking in I opened an email and clicked the link.
In big, red, bold letters: “You are positive for herpes II”.
A punch in the gut. I sat down on the sidewalk, breathing hard. My sexual life was over. Physical connection was denied. I was a leper.
For the rest of the day, I quietly reeled inside. It was an hour before I was able to bring it up with my friend. His sympathy was soothing, though I kept reminding myself that he did not have this curse to bear. That night I went to a party, where it was overwhelming to look at the happy people connecting around me. Twice, I pulled a friend aside and broke down, confessing. One of them, it turned out, had HSV-2 as well. There is life after it, she reassured me.
I had done everything right: used protection, minimized my risk… I even got the optional HPV vaccine, paying out of pocket, because I didn’t want to be the cause of someone else (or myself) getting cancer. It felt like I was being penalized for being conscientious. I alternated between casual nonchalance and despondence.
Like something out of the 1950s
The next day I did a lot of research and learned more about HSV-2. It’s possible to have the virus and be asymptomatic (I never had symptoms.) It’s also possible to spread when you don’t have symptoms.
The statistics shocked me: depending on the population, 20–80% of people have the virus. And 90% of people who have it don’t know it.
Why? It turns out that the CDC doesn’t actually recommend testing for the virus unless you have symptoms, saying that “there is no evidence that diagnosing genital herpes with a blood test in someone without symptoms would change their sexual behavior and stop the virus from spreading […] the risk of shaming and stigmatizing people outweighs the potential benefits.”
Unlike with other STDs, the CDC doesn’t require aggregate reporting of results. We don’t actually really know how many people have Herpes, nor do we have data on prevalence by location or demographic, or transmission rates as a result of different sexual acts. You can look up your chances of getting HIV in one sexual encounter, based on what you do. With Herpes, this data just isn’t available.
It was a mindfuck to straddle two completely opposite interpretations of my situation. From one perspective, I had a terrible disease and a legal obligation to notify all future sexual partners, which was likely going to have a tremendous impact on my sex life. From another, I had an extremely common condition which a good fraction of my friends also had, and was just unlucky enough to know it.
After more research, I came across a 2005 study which changed everything. The authors re-tested blood samples and found that for the HerpeSelect ELISA, which is the prevailing test (and the one I took) up to 50% of positive results might be false. In fact, results whose values were close to the threshold value had a 90% chance of being false positives!
The threshold value was 1.1 and my result was 1.18, so that gave a lot of hope.
There’s two ways to know for sure (at least, with much greater accuracy): testing a sore (which I didn’t have) and a Western Blot blood test, which is only administered by a research lab at the University of Washington. It’s expensive, and insurance doesn’t cover it.
“Don’t Talk About It”: The state of Herpes in America.
Let’s take a moment to reflect on what we’ve learned about this backwards state of affairs. A giant fraction (1/5 to 4/5) of the population has a relatively benign but highly stigmatized virus, the CDC doesn’t recommend testing for it, and the leading test is up to 50% inaccurate. Rather than do the hard work of breaking down stigma, our country’s response is “just don’t talk about it.”
For most people who have it, HSV-2 doesn’t cause terrible perpetual sores. It doesn’t cause cancer or have any common long-term health consequences. Serious complications are extremely rare. The stigma is much, much, MUCH worse than the condition.
Several times during this period, I was with a group of friends who were casually joking about Herpes. Each time, I looked around the room to note there were more than five people. “One of you has it!” I thought, and you just don’t know it.
A state of confusion
So did I have Herpes? Or did I have a 1/10 chance of having it, even lower it than the general population? I couldn’t wrap my head around these numbers or their implications for my life.
I had a greater sense of comfort about everything after reading forums. Many reported that disclosing their status had actually made them closer with their partners, enhancing trust and intimacy. I learned ways to talk about the condition — for example, “I am a carrier for the HSV-2 virus which can cause genital herpes.” Also, a prophylactic medication like valacyclovir is generally quite safe and reduces (although doesn’t eliminate) risk of transmission to partners.
I received a follow-up consultation from stdtestexpress.com:
Operator: Thank you for getting tested through our service. I am confirming that you saw that you have been diagnosed with HSV-2, or genital herpes. It is very important that you disclose this to future sexual partners as a way to avoid spreading the disease.
Me: Cool, okay, thank you. I have a few questions. I saw in a study online that the ELISA test has a high false positive rate, isn’t it possible that this is a false positive?
Operator: Sir, you have Herpes, the test has confirmed this.
Me: Gotcha. Alright. So, do you know how likely it is to transmit based on various sexual acts? Like genital touching, oral sex, vaginal, anal?
Operator: Sir, it sounds like you’re making excuses for not wanting to disclose. It is very important to not enter into denial and disclose to all sexual partners.
I hung up the phone, again dismayed at the state of medical care in our country.
Further testing
I saw Dr. Paul Abramson, an incredibly knowledgeable doctor (who contributed to this article) in San Francisco. We discussed the two options I had: pretend this never happened, which he agreed was justifiable given the FUD around the situation, or take the Western Blot test and know for sure. Why should I take the test, I asked myself, when nobody else was testing? When there was nothing about my situation that indicated I was more likely to have it than the average person?
After speaking with a few friends about it, I decided that I wasn’t ever going to fully let go of this diagnosis until I took the test, so I chose the side of awareness. It took several months and multiple reminders to the University of Washington to get the test, and another month and a half for me to finally get up the nerve to come into the office and get my blood drawn.
A week later, I received an email from Dr. Abramson through a confidential portal. I snoozed the email twice. One day, when I felt emotionally capable of handling the results, I opened the email.
I didn’t have HSV-2.
I was sitting on an airplane which was waiting to take off and breathed a sigh of relief from a burden, the extent of which I didn’t realize I had been carrying.
Let’s Talk About This
I was free of the weight, and yet during that time period, I experienced what it was like to be a carrier of this over-stigmatized and poorly understood condition. Sex is core to our self-worth and the way we connect and love. To stigmatize a condition and then ignore it leaves people in a state of anxiety and fear.
I don’t plan on getting tested again for HSV-2 unless I have sores. I know many doctors recommend fiercely against it, and I now understand why. It’s unfortunate that we are incentivized against knowing the truth because of stigma. And it’s telling that I am not comfortable publishing this openly, even when I have been tested negative, because the stigma is so strong. (Thank you Zarinah for being open and bold in all aspects of your life!)
We need to talk about this. It’s unacceptable to throw awareness under the rug, if it leaves an unlucky few to bear the consequences of our ignorance.
Herpes isn’t that big of a deal. A lot of us have it. Most of us don’t know. Spread the word!
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