A few years ago, I found my first herpes support group on Facebook, and on the façade, it seemed very supportive. Messages of “Keep your head up!” Be strong, you’ll find someone!” and “It wasn’t meant to be.” seemed to flood the daily feed. Even though I knew I wasn’t the only person living with herpes, it was great to finally see and hear other people’s stories. The overall morale of the chats was positive and uplifting, which for a newly diagnosed individual can be essential. However, every so often, I would come across a post asking for advice and support.
I feel terrible, and I need your advice. Last week, I was drinking, partying, smoking (whatever) with my friend. Things got out of control, we had sex, and I forgot to tell them about my herpes status. I feel terrible, and I want to tell them, I just don’t know how to.
It didn’t take long for me to realize that once the comments have been disabled, it was safe to assume that the poster was virtually attacked. Similar posts often bring out, what I like to call, The Bully-Brigade. The Bully-Brigade is the barrage of people that come together to virtually bully anyone whose actions and views don’t align with theirs. With comments like, “You’re a terrible person.” “How could you forget…” and “People like you should be locked up!” — The Bully-Brigade has struck again.
The comments and attacks vary, but the one that sticks out the most is the one of blame. It’s the person that says, “You know, many of us wouldn’t be here if our partner had told us. If my partner had told me that they had herpes, I never have had sex with them. You should’ve given them a choice.”
This one always bugs me, because they so conveniently forget that they, in fact, did have a choice. To have consensual sex, without knowing your partner’s sexual health status, was a choice. The power to control the sanctity of my body is my responsibility, and the same for your body. Do you not eat when you’re hungry, drink when you’re thirsty, or sleep when you’re tired? So, why when it comes to sex, is it only the other person’s responsibility to protect you? I don’t say this to point blame, I say this to take accountability.
Think of your body as a new car you just bought. You wouldn’t give the keys for your new car to a person whose driving record you didn’t know and whose license you haven’t seen, would you? No! You wouldn’t! But if you did, and they crashed it, was it not your choice to hand your keys over to them, in the first place? We don’t take that risk with material things, but we assume that risk with our bodies every day. From the moment I laid eyes on my partner, once I know I want to have sex with him, the responsibility to ensure my sexual health is mine, and mine alone. It was my responsibility to make sure that he posed no threat to me, and the choice I made to not verify his status was, in fact, A CHOICE.
Over the years, I learned to stop arguing with The Bully-Brigade; because they had already made up their mind that their positive diagnosis was someone else’s fault. What I try to do now is pose the question, what if…
You say — “If they had told me they had herpes…” I pose the question — “What if you had asked…?”
What if they told you they were clean, because the test they took didn’t include herpes? Therefore, they had no way of knowing they had the virus.
What if they had the test that included herpes, but because they recently acquired the virus, the antibody test came back negative? (It took 9 months for my antibodies test to detect herpes).
What if you had used condoms? (I used condoms when herpes was transmitted to me).
What if they told you they had a history of cold sores? Marketing doesn’t make it clear that cold sores and herpes are the same virus. Many people don’t think that their cold sores are herpes or that they can impact their partner’s genital region. What if this information was made clear to the masses?
What if doctors did a better job of educating patients before, during, and after their diagnosis? What if they pointed patients to support groups after their diagnosis, instead of giving them a prescription and sending them on their way?
What if sex education was clear and transparent, and inclusive of all sexual behaviors, sexualities, and sexual health? What if consent and boundaries were mandated? What if the stigma was never able to exist because people were educated on the truth of all sexually transmissible and non-sexually transmissible viruses?
What if testing were made easier for all to access? What if when I asked to be tested for everything, I was tested for EVERYTHING?
What if we stopped shaming sex, sexuality, and people with STD/STIs?
What if you’re herpes positive, you disclose to your partner, but you don’t ask to see their results in return? (Is that not, once again, handing someone the keys to your car without checking their license, all-over again?)
What if asking about a person’s sexual health was as easy as saying hi? What if asking to see a person’s test results (and getting them), was as easy and pleasurable as having sex?
What if they never assaulted me?
What if the dad, the aunt, the uncle didn’t kiss the toddler, and pass them the herpes virus?
What if the mother didn’t kiss her child and pass them the herpes virus?
What if you had waited another 3-9 months to get re-tested before having sex?
What if you had waited to go and get tested together?
What if you had asked your partner their sexual health status?
While the what-ifs are endless, none of them can guarantee that you still wouldn’t have ended up with herpes virus. With all the precautions that you could’ve taken in your adolescent or adult life, you still could’ve acquired the virus before ever taking your first steps. At the end of the day, we’re all here. So, instead of focusing on what if, focus on the future. A lot of why we feel what we feel is stigma. So, instead of trying to change others, maybe we can change our perception. And with that, we can change the stigma.
Joke: If you google random symptoms, all roads will lead to cancer. If you have sex, all roads will lead to herpes; it’s almost inevitable.
5-Lastly, PEOPLE LOVE SEX! And the general public’s unwillingness to change their sexual habits is the leading reason people continue to get STD/Is.
Take HIV for example; HIV, unlike herpes (HSV), is a fluid transmissible virus (passed via blood, semen, vaginal fluids, breast milk, and in rare specific* cases saliva). The virus has to enter the person’s blood stream in order to replicate. The most common and effective way to minimize their chances of getting HIV, are to simply use condoms/barriers and test your partners before having sex (before Prep and Pep, etc). Seems simple enough right… WRONG!!!!
The truth of the matter is; many people don’t use condoms. For whatever reasons people give: they’re too tight, they feel uncomfortable, allergic, or they lose sensations, etc. It all balls (pun intended) down to people don’t want to use them. I’ve had plenty of partners throughout the years (before and after herpes) that will get annoyed with me when I stop and tell them to get a condom. When it comes to the topic of getting tested; I remember asking men and they’re response was “Why? You think I got something?” or “Don’t worry, I’m clean”; without even being able to tell me when was the last time they actually went to the doctor. So, when you consider the reality that the use of condoms can minimize the spread of HIV; and people still don’t want to use them; that’s proof that people would much rather live in the moment and worry about the possible consequences later. And, for what it’s worth- there is nothing wrong with that. If you want to live a sexually empowered life, then do it. But, in this era of sex positivity, the conversation of sexual health is often not had.
The above (5) examples play a major role in the spread of herpes. I find it highly imbalanced to only focus on people not disclosing as the main reason this virus spreads.
Truth Serum: I can tell a man that I have herpes and educate him on all the possible ways of contraction; and that man may decline to be with me (which is totally fine). That same man, will still go out the following night and sleep with the next woman (who may not know she’s positive), and still end up with herpes.
This little story, is just another one of the many reasons why I can’t get behind the attack of a single individual for not disclosing. Everyone that had consensual sex (myself included) could’ve taken extra steps; but we(I) didn’t. Even if I had taken the extra steps (as I lined out in Part 1), I still may have contracted herpes. But in my case, I looked at my partner, allowed my trust in him and my feelings for him to be all the proof that I needed. The use of my feelings, that allowed me to assume his words and actions, as proof of his sexual health, was in-fact a choice, MY CHOICE. This acceptance of choice is what allowed me to get rid of the anger and find peace with my diagnosis; and that allowed me to heal.
Many of the toxic people I describe, and often debate with, hold onto that anger; and when someone even hints at not disclosing they go into attack mode; because (I believe) they’re still very angry. Some people choose to sit in the anger and dish it out rather than do the self-reflection and acknowledge the choices they made that landed them where they are. In the end it’s not about blame, it’s about choice. A choice that we had and made; a choice that, had we not contracted herpes as a result of it, we’d be proud to have made. Just because the end result was one that was not desired, that does not make the entire act any less of a choice. When we agreed to have sex, we all signed an invisible contract, without acknowledging the fine print.
So, getting on an invisible pedestal to degrade another person, just because their choices don’t align with yours, does not make you any better. At the end of the day; it takes two to tango, and each individual should be responsible for their own sexual health. We all should want to know our partner’s status; not just think and or assume it; but many people don’t ask. We all should get tested regularly, and be able to happily exchange results with our partners before we have sex; but many people don’t.
The reality is, many people would rather not spoil the mood or miss the opportunity. Most people won’t even talk about sexual health before they have sex. And, many people would be very happy not knowing the truth. People want to continue living and loving as if nothing has changed; hoping for the best.
It’s ok to encourage people to disclose by sharing your experiences. But to attack them, only puts people on defense and often times, they’ve already checked out of the conversation. Navigating this virus isn’t easy; we don’t have to make it any more difficult than it already is.
It’s time to change the conversation on herpes and start being proactive about our sexual health.
I’ve lived in New York my entire life; and while I know well the streets of Manhattan; if you drop me in the Wall Street area, I’m likely to ask a tourist for directions. Downtown Manhattan has no logic; there are no numbers, just street and avenue names, and unlike the rest of Manhattan, that’s a grid format, downtown is a series of awkwardly shaped triangles and irregular squares.
After wandering for 10 minutes, I finally arrived at the right place. Once in the room, their banter was a mental shoulder massage, that calmed my nerves for the recording. MandIi noticed my notes and said; “Bitch, you got notes!”. Yes!– I came prepared with 8 pages of notes, armed and ready to dismantle the stigma that is herpes; I was ready to lay some facts on the world. That’s when she told me that she didn’t want to focus on the data of herpes, but more on how I lived my life and dated casually, while being herpes positive… There went all of my notes!
Overall, I got great feedback and my words, and hearing my story, it helped a lot of people feel better about their status. So, even though I’ve discussed herpes on many posts during the life in my blog; I want to take this post to dive into breaking it down further. (Be Prepared… It’s a long one)
WHAT IS HERPES, REALLY?
First of all, herpes is NOT a skin condition. I know that many of us positives like to label it as such, to make it sound less scary to a potential partner, but that’s not the reality. A huge part in breaking the stigma is being honest; and if we’re being 100% honest; herpes is a viral infection of the nervous system, that is transmitted via skin to skin contact. There are two most common type of herpes is HSV1 (most often in the form of cold sores, with a rise in genital diagnoses), the next is HSV2 (most often genital herpes).
THE MAIN TYPES OF HERPES (HSV1 & HSV2)
First of all, it’s important to note that; the type of herpes is NOT exclusive to the location. A person can have HSV1 on any area of the body: face, cheeks, lips, and the genital region (anything below the belt). HSV2, although most commonly in the genital region, can in rare cases be present on the face, cheeks, or lips. It all rally depends on the individual’s immune system and where the virus was introduced to them.
So, let’s break down oral herpes. We’ve all seen young kids and adults with cold sores or fever blisters, well those were/are herpes. Most children acquire the virus from a relative. If you ever got a kiss on the cheek, or if your parents ever kissed you as a child; if they had the herpes virus in their system (aka a history of cold sores), they may or may not have exposed you to the virus. It’s interesting to consider that an innocent kiss, a human act of affection can forever impact a person’s life. But none the less, we are humans, we kiss, and sometimes when we kiss, we transmit herpes.
Genital herpes, on the other hand is solely, sexually transmitted. Before I go and break this one down, I want to take a moment to give a little quasi-history lesson. Herpes (in various forms) has been around since the beginning of time; but let’s jump to why there is a stigma with genital herpes in the first place. The reason is… SEX! For decades, a genital herpes diagnosis indicated that you were either, having sex before marriage or cheating on your partner. Unfortunately, as casual sex started to become more prevalent during the sexual revolution, the stigma on what it meant to have herpes still remained and began to multiply. For those determined to police the sexually free; degradation and fear tactics became the norm. Fast forward to today, and you have a stigma with enough weight to pound a Buick into a box the size of my palm.
Our bodies are covered head to toe with nerves. These nerves are responsible sending notes to our brain to be processed. If a person hits us, we feel it and our brain processes it as either pleasure or pain. So, regardless of where you stand on religion, politics, or sexuality; that is a fact that you can’t deny. The desire to feel pleasure, give pleasure, and receive pleasure; is, at it’s very core- human. As humans, we feel, we cry, we kiss, and we have sex. All of these biological actions are what makes us human, and sometimes, when we are being human, we make choices; and those choices may result in us acquiring herpes. Sure, if given the choice no person would CHOOSE herpes; but once we have it, we shouldn’t feel ashamed about it; because we got it being human. You wouldn’t feel ashamed if you got a cold right? So, I look at it the same way.
When you ask to be tested for everything, that test, most often does not include herpes.
HSV (1 or 2) are not included on most STD tests; which means, a significant percent of people with the herpes virus have no idea. This same percentage of people are able to transmit the virus, even though they have no symptoms. It should go without saying (but I will say it anyway). The virus can be transmitted with no outbreak present, this is called viral shedding (when the virus is present on the skin, but with no symptoms). Condom usage, a healthy diet, and incorporating antivirals minimizes the risk of transmission by a great degree, but there is no 100% guarantee.
You don’t have herpes, because you’ve never had an outbreak. (Outbreak = positive, No outbreak = negative… WRONG!!!)
Herpes does not always manifest itself in the way we assume it would. If you had a sex-ed class, you probably, saw images of blisters. Even though this is the most common manifestation of the virus; depending on the person’s immune system their initial outbreak can appear in a variety of ways. I’ve heard stories of it looking like a scratch, like raised skin from an insect bite, a small rash, and even a single bump. There are also those that never have an outbreak, but they may get a cold or have flu-like symptom; (9 times out of 10, you wouldn’t attribute a case of the sniffles to herpes) so, you wouldn’t go and get tested. But that may be an indicator that your body is taking a hit.
Cold sores are not herpes, so I don’t have to disclose.
People with cold sores or fever blisters (or any other fancy name) you choose to call your reactions; just know that they are, in fact, HERPES. Many people will say, “well, it’s not the same”, but if you look at HSV1 & HSV2 from a medical standpoint: they are both life-long viral infections, and they both can be transmitted, during shedding (no outbreak) and/or an outbreak. This is a horrible example; but If I had to break down the DNA of HSV1 vs HSV2. Look at your hand (all 5 fingers & palm) as HSV1, then consider your hand and add in the wrist, that’s HSV2. I won’t sit here and say that, if you have a history of cold sores, you should tell every potential partner. Honestly, the decision to disclose (with oral or genital herpes) is a personal decision; especially since the CDC doesn’t require testing and many doctors don’t advocate disclosing. But consider this; if you don’t mention that you get cold sores to your partner, and you perform oral sex on them and by accident, you transmit the virus to their genitals; consider what does that mean for their sexual future. Hence why people advocate for disclosing.
THE STIGMA OF HERPES
The most difficult part of this virus is, in fact, the stigma. People assume we are walking blisters; in pain everyday all day, and that we are always living with outbreaks. They assume that they will know what a person with herpes looks like and they assume that a person with herpes must’ve had an entire host of partners, and that’s how they got their virus. When the reality is: most people never have symptoms; and overtime (as your body adjusts to the virus) those that do have actual outbreaks; the outbreaks, become less frequent less painful. And the biggest myth of them all is the whore-herpes-false narrative. I know plenty of people that contracted this virus with their first partner, from cheating spouses, and casual sex. There are plenty of people with hundreds of partners and don’t have herpes and there are people with only one partner that has the virus. You won’t know until you ask and get tested.
FACT: THE FIRST YEAR IS POSSIBLY THE WORST
Studies indicate that you are most contagious during the first year of exposure to the virus (if you have an initial outbreak). A newly diagnosed individual may, after their first outbreak, experience recurrences, and may also be shedding the virus as the body has not fully begun to build HSV antibodies. On the opposite end a person may acquire the virus and never have symptoms, they too, during this period are most contagions due to viral shedding.
SO MANY UNKNOWNS
Because we are human, above all things, we need control and answers. We need to know that 1+1=2; because the idea of the unknown is scary; then, herpes happens. We’re taught that if we are careful and have ‘safe-sex’ we will be alright; then herpes comes along and throws that idea out the fucking window. The reality is that, herpes doesn’t care who you are, what you are or how you identify. It doesn’t care about your race, your income, or your profession. It doesn’t care if you go to church or if you’re having sex in back alleys. Herpes doesn’t think, it just does what it wants. And at the end of the day, it wants to travel and replicate and it, unfortunately, uses us humans as the means for that connection from point A to point B.
STARTING OVER AFTER HERPES
So, your results come back, positive for herpes, now what? If you go to a GYN or regular doctor, you’ll find pamphlets and support groups for alcoholism, drug abuse, cancer, and HIV; but you’ll rearely find any for herpes. In school (again, assuming you received sex-ed), all they told you about herpes, at best, were ways to avoid getting it and that it was incurable. Everything is before; they never educate you on the after. Often times, when you’re told that you’re HSV positive, the doctor writes you a prescription for antivirals and sends you on your way. It’s a sad reality that there is little to no support (from the medical community) in combination with the stigma.
The stigma and shame of sexuality, has told us that being diagnosed with herpes, is our penance for being loose, promiscuous, or too sexual; and because of that, we now have to live in silence. The stigma tells us that we are dirty and unworthy of finding true love; and if you do happen to meet a person willing to accept you, you had better shut your mouth and be happy. The stigma tells us that it’s our fault and that we now have to walk around with a scarlet “H” burning a hole in our hearts. The stigma, that fucking stigma needs to take multiple seats.
We are not dirty! We deserve love and respect! And, we deserve to be happy!
If you are struggling with your diagnosis, there are support groups on Facebook and Reddit. There are advocates working to dismantle the stigma of herpes and spread the truth. It helps to have friends or family you can talk to about what you’re going through; you shouldn’t have to do this alone.
If you are a human being, that has sex (whether it’s with one partner for 500) herpes is inevitable. 9 times out of 10 you either know someone with the virus, already had sex with someone with the virus, or will have sex with someone with the virus in the future. That’s just the reality of the virus.
How you choose to live your life, whether negative or positive is totally up to you. All I hope is that, after you’ve read this post is the following:
1- If you’re already living with herpes, you know that you don’t have to go through it alone. There are various platforms on the internet that you can seek out and join to have a piece of mind. Confide in family and friends and never be afraid to live your truth. I know the fear of being “outed” can be terrifying. But there reality is, once it’s out there- no one can tell your story.
2-If you’re herpes negative, and want to remain that way, instead of assuming your partner is STD(I) negative, you both go and get tested together. It’s better to know than to assume.
3-If you’re herpes negative and you encounter a person that’s herpes positive; understand the courage that it took for them to be honest, and think back to this post. There is nothing wrong with not wanting to pursue a person with herpes, but remember that they are still HUMAN. Thank them for telling you and respectfully decline. DO NOT shame them or call them names, as they are already dealing with enough.
If you feel like I’ve missed something, or you have any questions; my email is up and running, so don’t hesitate to reach out to me.