With a constant rise in new cases of herpes diagnoses, more and more people are seeking support. When I was diagnosed, in 2009, there was only the internet. The internet at that time offered only information, and no support for someone that was newly diagnosed. Thankfully, I had family and random friends for support to get me through.
Almost a decade later, there are now dating apps (Positive Sines), podcasts (Something Positive for Positive People), activists and the HANDS organization (Herpes Activists Networking to Dismantle Stigma), books (Asking for a Friend), in person support groups (Love Profound); and lastly, a whole host of Facebook & Reddit Subgroups. Many are filled with support and positive energy; and for a person struggling with the virus, these options will offer you the most peace of mind.
When I was diagnosed, sites like Facebook and Reddit weren’t as popular, as they are now. Now, there are plenty of great support groups on Facebook and Reddit, but the problem with these groups (and the problem with the internet period) is that, more often than not, they are filled with toxic people. I joined to hear the stories and offer advice. I felt that my journey of dating while being herpes positive, would be able to help others. I was shocked to find that there was so much stigma, shame, and degrading of others within these, so called, support groups. So much so that, I sometimes look back and think… Thank God! I was diagnosed when I was! Because there is no guarantee my journey would’ve been so positive had the “support” been as negative as what I see in some of these groups now.
There are many studies that show groups that are often degraded will, in an attempt to reclaim their power, degrade those within the same group. The act of putting others down, to elevate the other’s position is rife within the herpes community. No topic garners more hateful, degrading, shaming, and stigmatizing speech than the issue of disclosing.
Now, before I jump into things let me make it very clear. If you know that you have an incurable virus that may forever impact the life of another human being, you should disclose (tell them). Full consent does require their full knowledge of the risks involved. There! It’s done! The spread of herpes will now be forever halted- Right… Not Even Close!
In a perfect world, disclosing only works for those that know they have the virus, in the first place. If we walk away from Fantasy World, and get back to the real world; we’ll realize that there are many more factors that contribute to the spread and contraction of herpes. The herpes virus is a HUMAN virus. Sure, there may be strains that live in the animal kingdom; but we are talking about humans, humans that process the cognitive ability to think, process, and then act. I will not touch on acts of rape and/or assault, as the entire event was not a choice. I am specifically talking about two consenting individuals making the choice to have sexual relations.
No matter how old you are, we all had some form of sexual education. I, for example, went to catholic school; so, the information I received was more abstinence based. But the message that sex could lead to disease and un-planned pregnancy was evident. Don’t have sex or this or that will happen. So, even if it wasn’t the most fully informed education, we all knew that sex carried some risks. When we chose to have sex; engaging in the act, was signing an invisible contract that assumed whatever risk may come our way.
When I was diagnosed after being in a committed relationship, I was furious. I was hurt, shocked, heart-broken, and briefly depressed. For a moment I wanted to scour the internet to find him and call him out. However, I had to take a step back and realize the role I played in this. Sure, I asked him and he said he was “clean” and we used a condom. But there were other tools at my disposal that I negated to use. I could’ve asked to see his test; but I didn’t. I could’ve postponed having sex until we both got tested, and exchanged results; but I didn’t. Even if I had, there’s no guarantee that his test would’ve included herpes (as most don’t); and because of that; I would’ve seen his results, that were absent of herpes (assumed he was negative), still made the choice to have sex, and ended up with herpes.
A lot more goes into minimizing the spread of herpes than just disclosing one has herpes. So, I can’t get behind this moral compass of blaming someone else for the choices that we all knew, on some level, carried some risk. They aren’t called Sexually Transmitted Diseases because you get them sharing a hug. You get them when engaging in an act of sex.
Now, there are many individuals that have herpes passed to them from a family member via an act of affection, and not sex (almost always a kiss). More often than not, this is classified as cold sores (oral herpes), most often Type1. But these cold sores (oral herpes), that most people forget they even get, have the ability to be passed to another person’s mouth or genitals, and they will then have (Genital Herpes Type 1_GHSV1), adding to the number of newly diagnosed genital herpes cases.
There are many reasons why this virus continues to spread, and here are the ones that should be getting the attention, instead of attacking one person at a time, for not disclosing.
1-The CDC does not require testing for Herpes 1&2. So, many times when you go and ask for “everything” you are not getting tested for herpes (HSV) or HPV. The medical community, outside of the CDC, are resistant to giving the test, when specifically asked by patients to be tested. Doctors are also constantly misinforming patients on what they should do after being diagnosed.
- Doctors have told patients as long as they take meds and use condoms, and refrain from sex during an outbreak, that they don’t have to disclose. (Completely forgetting that both Type1 & Type2 are capable of being passed with no symptoms present (Asymptomatic Shedding)
- Doctors have told patients with herpes antibodies that, because they have no visible outbreak or symptoms that they were only “exposed” to the virus, but don’t in fact “have” the virus; leaving them to believe that they pose no threat to sexual partners.
2-Access to testing & education, play a major role in the spread of herpes, in the youth community and those communities that lack financial infrastructure.
- If education was mandated to talk about the herpes virus from a medical stand point; young kids would know that cold sores are herpes and have the ability to be contagious.
- If access to testing was affordable, many people would know their status. The reason why HSV is not often included is because it’s more expensive, so many people already have it, and the risk of a false-positive diagnosis.
- In addition, a person that’s never had a sore or bump isn’t thinking to ask for testing. People often assume NO SYMPTOMS = NEGATIVE, when that’s not always the case.
3-Public Perception: Commercials have done such a great job at marketing cold sores as something you just put a little cream on, and you’ll be fine.
- Marketing doesn’t tell you that your cold sore is actually ORAL HERPES (most often, but not exclusively HSV1)
- Marketing also doesn’t tell you that your cold sore, can shed when you’re not having an outbreak; and if you happen to perform oral sex on your partner, you can then pass them Genital Herpes Type1
4-This virus is tricky AS FUCK!
- When it comes to herpes, condoms don’t always work to protect a partner (if it did, I wouldn’t be GHSV2+). So, even if you use condoms and a partner is asymptomatically shedding; they can transmit the virus.
- Add to that, If you ask a partner to get tested, there’s often a 3-6 month window where the virus may be setting up shop before it’s visible on a test. The fact remains that even if you make your partner get tested and exchange results, there is still a risk that someone could have herpes. So, after you’ve had the conversations, waited to have sex, got the tests, then proceeded, and months later – still contract herpes!!!! What could you have done any differently? What do you do now?
With this, I push you to stop looking at this virus as something that’s more than sexual, IT’S HUMAN. The most recent data says 1in3 have HSV1 and 1in8 have HSV2. So, it’s very likely you may have already been with a herpes positive individual, and not have known it.
CONTINUED IN PART 2