Wrong Herpes Approaches

[Stephen Colbert]

“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
—
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!

You spread your ass and now you're fucked.

https://medium.com/@like_antennas_to_heaven/i-thought-i-had-
herpes-for-seven-months-the-overstigmatized-public-health-
clusterfuck-that-is-eb5c9da7926b