When I decided to start my blog, my purpose was to create a shared emotional outlet. When I began divulging my sexual exploits, I strapped on my seatbelt and got ready for the ride. When I made public my herpes status, I braced for impact. I knew very early that my views and progressive ideas about sexuality, sexual health, and inclusion would not be popular, and I didn’t care. I stopped caring about what others thought, and I focused on telling my story. I told my story for myself and those who needed to hear something different, something new and inspiring.
With every story, every blog, and every interview, more and more people reached out to me and congratulated me for being the voice they couldn’t find. I’ve since picked up the torch, with other sex-positive activists, to push and correct the language for change. Every day we’re posting, tweeting, blogging, and podcasting for proper and thorough education regarding sexual health and STI stigmas. We know that the road ahead is long, and we continue to rush against the tide. I take pride in what I do, and I maintain a positive outlook, even in the face of nay-sayers. However, last week, I found myself having to check a bitch!
To be clear, I use the word bitch the same way the late great Bernie Mack used the word “Mother-fucker” in The Kings of Comedy. The word bitch is used as a noun to describe a person, a place, or a thing. And by my definition, these people were complete and utter bitches.
On Facebook, I’m a member of many sex-positive, polyamorous, and swinger group. These groups exist as a safe space for both new and veterans of the lifestyle to meet and engage with like-minded individuals. The groups are regularly a sex-positive space that exists without shame. So, imagine my surprise when a group member decided to screenshot comments from a post, repost them on their page, and use it to further perpetuate an already existing negative and inaccurate stigma.
A close FB friend of mine alerted me to a gentleman that used my public position on being herpes positive to sex shame by writing, “It’s all fun and games until you catch something.” Of course, he posted this in a group that I wasn’t a member of, so I joined the group and addressed him directly when it was brought to my attention. For what it was worth, the group people actually attacked him for trying to shame me; kudos to them. But I wanted to know what his goal was? He claimed that he didn’t like promiscuous people, and he thought that was a good enough excuse. I took the opportunity to inform him that many people who find themselves STI positive (especially when it came to herpes) were anything but promiscuous.
The kids living with herpes (acquired through a kiss from their parents), to the victims of assault and rape, to the people who didn’t know their partner’s cold sores caused a threat, and the people whose test results didn’t include herpes. There are many ways a person can get an STI without being promiscuous. He continued to debate me with opinions, despite my facts, but I was relentless. He claimed that he was just trying to get the information out there, and I told him he could’ve done that without adding his little flair. When the conversation got too heavy, and he realized that he was in an unwinnable fight, he flipped the switch and commenced blaming the women he stole the post from.
In full transparency, he wasn’t in the original group where the comments were screenshot from. It was a black woman in the (polyamorous, swinger, sex-positive) group that took it upon herself to screenshot the comments and repost them on her page, and he copied them from her. As black women, we are already oppressed. As black women who are sex-positive, we are double oppressed. It never ceases to amaze me how people who already exist in an oppressive society will find empowerment in oppressing others. I went on her page and couldn’t find the actual post, but from her ill-informed followers’ comments, it is evident that sex-positive activists had A LOT of work to do to break the stigma.
As much as he tried to deflect from the virtual ass-whooping I was serving up, he was right that I should re-direct my energy to her. But before I do, I had to make it clear; I didn’t care to change his mind. Truth be told, I never go out of my way to change the minds of those who have their heads buried in the sand. I only ever comment to reach those struggling with their diagnosis, know someone who is struggling with their diagnosis, or be a voice for those who (years later) need to remember seeing my comments, to see that they are still loved. I do it to empower, NEVER to shame.
Now, onto Bonita (aka Black Becky), your ignorance runs through your veins. The fact that you saw fit to try and shame a person who is already public about her herpes-positive status shows not only how immature you are but how desperate you must be for attention. I’ve looked through your Facebook, and you’re all over the place; you reek of someone incapable of thinking for themselves, and your followers are no better. I’m sure that you and over half of your negative commentators genuinely believe that they “know when a person got something,” despite the fact that you, or them, have probably NEVER seen the full STD panel test of your partners. You’re ill-equipped with the knowledge and ability to have the conversation, and you gloat from a position of sheer-luck and blind-faith.
In closing, I’ll say this. You are toxic. The rhetoric you perpetuate is toxic. And the fact that you tried to infiltrate a sex-positive space only to shame others is toxic. I pray you get all the help you need and that you don’t find yourself facing the same ridicule you tried to place onto others.
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.
Now that you have this horrible thing plaguing you, how can you ever live a normal life again? That was a question I asked myself once I was, finally, ready to get back into the dating world. Part of the answer is, having herpes is only as horrible as you make it. Another thing to consider is… What is normal?
We all have traveled different roads and have different stories to tell; and since people living with this virus are often secretive about it; this road is rarely ever paved, for the next person’s journey. There is a lot of trial and error in dealing with this virus; and I’ve tried quite a few things and here were my results.
First things first: I want to stress the importance of taking time to actually heal after being diagnosed. I’m talking about emotional, spiritual, and mental healing. The first thing we often struggle with, post positive, is – Who will want me? I’ll tell you now, the answer is “Somebody!” Maybe not the person you thought, but there are enough people in the world that will see you and see beyond the virus. But, I deeply stress self-healing because; there are just as many people that will see your desire for acceptance and use that to have control over you. And what was once a great romance; soon becomes an abusive, manipulative, unfaithful, and sad situation. You’ll find yourself staying in that bad situation because you fear that no one else will want to be with you.
You have to want yourself more than you want them. No person (herpes or not) that comes into your life should complete you. You have to be complete with yourself; that way, anyone that you allow to occupy time in your life, only adds a bonus. Think of how good it felt to see that 110% on a test because you answered the bonus question- that’s the feeling you want.
ALL ON FRONT STREET (Immediate & Early Disclosure): “I’d rather not waste my time, so I just tell them to get it out of the way.”
I only encourage this approach in hook-up scenarios (online or in person). I’ve online dated for a very long time, and most often than not, conversations turn to sex. So, as a tactic to get to the point I state the following:
“So, just so you’re aware, before we go any further (before I come over); 10 years (X time) ago, I was diagnosed with genital herpes. None of my partners have tested positive, and I’ll do what I can to keep you negative; but you need to be aware of the risks.”
The above, script gets the fact out there, with details in relation to my diagnosis and the partners that I’ve had that have not been affected by the virus. I allow the person to think about it, I honestly answer any questions they have and I allow them to make a choice.
If you have not had this virus and you don’t have a record to reflect on; I used to say this:
“Before we go any further (before I come over); I need to let you know that, I was diagnosed with genital herpes (however long ago). I’m not having any symptoms right now, so the risk is minimal; but you should be aware of the risks.”
It should be stated, that you will have the most recurrent outbreaks and episodes of shedding, within the first year. Antivirals (valtrex or acyclovir) and an overall healthier way of living will minimize the frequency of these episodes. But just because you’re not showing symptoms, that does not mean the virus isn’t present. This year period is a good time to self-reflect. Take the year to learn your body and what your triggers are. Adapt a healthier and stress-free life and move forward.
***
I don’t like the AOFS approach when it’s a person you want to pursue in a more romantic way. When you blurt out herpes; you’re not allowing them to get to know you. Every person’s experience with this virus is different, but the image of what herpes is (magnified by the STIGMA) is always bad. Telling a person too soon, may cause them to only see the virus and not you. I realize that; nothing hurts more than dating a person, really falling for them, then when you finally disclose, they run for the hills. This rejection can send you into a downward spiral and make you never want to try again. But consider this fact; that people will reject you for a plethora of reasons: your education, past, finances, sexual past, the list goes on. Sure, you probably envisioned that they would be “The One” and now your hopes and dreams are shattered. But I promise you, they were not “The One”, they were simply the one you wanted.
IN DUE TIME (Tactical Disclosure): “I like to wait a few dates in or before we become intimate”
I advocate for this option for many reasons.
1. I’ve encountered many men that seem to be nice, that turn out to be ass-hats. Not to mention, you’ll be grateful that you didn’t tell them if the ending turns disrespectful. In cases where I was called a bitch, I was happy the words “dirty” or “diseased” weren’t placed in front of it.
2. There’s no need in disclosing something about yourself if you never make it to date one. With the dating culture filled with ghosts; the last thing you need, is to think someone didn’t show up because of you having herpes. I run out of hair follicles if I try to count how many times I’ve been ghosted, without them ever knowing I have herpes.
3. The phone (or text) conversations seemed to flow like water; but the in-person date was so dry, you swear they hired a ghost-writer. If you never make it to date two, was all the stress to disclose really worth it?
4. What’s wrong with just enjoying a date for the sake of a date? Again, the pressure and realization of this virus forces us to act with haste to find a partner, settle down, and be done with it all. So, we get all jazzed up to put our best foot forward to be chosen. But the truth is; there is nothing wrong with dating. Go on a date, share a kiss or two; it’s totally fine. Take your time and think to yourself; Would I want to be with this person, if I didn’t have herpes?” If the answer is yes then; set up a time to get ready to have the conversation. But if the answer is no; just enjoy the date.
***
So, once you’ve determined you like this person, what do you say? The answer is, there is no perfect answer. The truth is, some people will NEVER want to take that risk, and you’ll have to accept that. It doesn’t make them bad and it doesn’t make you dirty or whatever; it just makes them “UNWILLING TO TAKE THE RISK”. I strongly advise confiding in a family member or friend and practicing. It may also help telling people that you have no genuine desire to be with. I’ve found the best approach is confidence combined with a dose of education. The fact is; many people know nothing about herpes. They know: they know it’s called an STD, they don’t want to get it, it’s forever, and causes blisters. Arming your conversation with facts will only help when disclosing. Facts help to dismantle the stigma; and it also shows people they don’t know all they thought they did. Practice makes perfect!
I’ve disclosed; over the phone, via text message, and I’ve displayed my status on dating apps; but I’ve found that I prefer disclosing in person. I like the in-person approach, because I like to see their face as I tell them. I often realize that their face displays one of shock or surprise, because I don’t look like a person that has herpes. (Because people with herpes, have “A LOOK”). I can see their brain reprogramming itself as I go on and on with details and stats.
One of the last dates, when I disclosed in person; went something like this. (We met on OKCupid, after date #2, and after date one he was already talking about giving me a ‘body massage’. I suggested we walk to the park and talk for a bit)
Me: So, before we go back to your place, there is something you should know. 10 years ago, I was diagnosed with genital herpes. I’ve had boyfriends and partners since then, all of whom have never tested positive. I always do what I can to keep my partners negative, but as there is always a risk, that I have to make my partners aware of.
Him: Wow! I wasn’t expecting that. Sorry you’re dealing with that. You know I really care about my health; I get tested after every partner, so I don’t think this will work.
Me: Don’t be sorry. Many people have it and many people are unaware they may be carriers of the virus, so I just do what I can to inform my partners.
Him: Wait what? Don’t you get like blisters and stuff?
Me: Some people do, but majority of people that have the virus show no symptoms; and many tests don’t include it. So, a lot of people are walking around, assuming they are negative, and all the while- are carriers of the virus and can spread it.
Him: I didn’t know that.
Me: Many people don’t. I would suggest that you and your partner get tested and share results before, if you care that much; since after would be too late. I told you, because I know, but like I said; many people don’t know, some people don’t tell, and many doctors don’t enforce telling.
With the above, I was honest, direct, and was specific about my experience with the virus. The date didn’t continue, but there weren’t any hard feelings (I wasn’t head over heels for him), but even if I had been; I would still consider it a good disclosure story. There was no anger, disrespect, he asked questions and I answered.
The below is a great way to feel a person out, if you’re still afraid to put yourself out there. This will be easier if there is an easy segue to the conversation, but with practice you’ll get better.
SCENARIO 1:
Me: My friend’s boyfriend (girlfriend) just found out that they tested positive for herpes.
Him/Her: I’ll that’s disgusting! Was he/she cheating on him/her?
Me: Not that she knows of. But, you know a lot of people have herpes, and most don’t know it.
Him/Her: No! Only dirty people get herpes.
Me: Would you call a child that gets cold sores dirty? Cold sores are herpes too.
Him/Her: No it’s not!
Me: It’s actually the (almost) identical virus. There’s actually a rise on genital HSV1 from people contracting it from oral sex.
Him/Her: But, I get cold sores too. What does that mean for me?
Me: Welcome to the club. I have herpes too.
SCENARIO 2:
Me: So, when was the last time you went to the doctor?
Him/Her: (Enter date) hopefully! Why?
Me: Well, I just want to make sure we both get tested and know our status before we plan to have sex. I feel knowledge of sexual health status is very important.
Him/Her: Well, I’m good! I don’t have anything. What about you?
Me: How would you know?
Him/Her: Because I always use condoms and I don’t mess with dirty people.
Now, the following is pending on the conversations you two may have had; like how soon the topic of sex was brought up during your previous conversations
Me: So, you’ve seen the test results of every person you had sex with (including oral)? And you know condoms don’t protect you from everything; right?
Him/Her: No. But I know the people I sleep with, and they’re good, so I know I’m good!
With this response (and strong mental arrogance) you now have enough knowledge to either enforce testing before you continue, or simply walk away.
One mistake I made early on (and sometimes still do, on occasion); I would assume that I’m the worst option on the table. I have herpes; so, nothing can top that. I only cared that they knew my status, but I NEVER enforced confirming theirs; it was enough for me to know they wanted me. I simply assumed, like we all do/did that the other person was STD/I negative. We put all the responsibility on the positive person to have to disclose, but rarely do we ask or confirm. Assumption is not Confirmation.
So, before you lay down or engage with a person (especially if you don’t want to use condoms or other barriers) know their status. No one virus or infection is better than another, but I’d prefer to not add any additional ones to my list.
Being diagnosed with herpes, while on my road to peace; I forced myself to define (for me and only me) Who I am.
I am Carolyn. I am a black woman, of African American descent. I am 32 years old and my zodiac sign is a Gemini. I am an athlete: I exercise regularly, I run marathons, and I’ll be doing my first triathlon next month. I am an artist: I sing, dance, design, sew, I paint, and do computer graphics. I am a daughter, sister, niece, cousin, aunt, sister-in-law, etc. I am a great worker, listener, advice giver, and fantastic friend. I am a foodie and I am a person that enjoys delicious cocktails. I am friendly, bubbly, sarcastic at times, serious and/or uplifting when I know that it’s necessary. I am a critical and tactical thinker, and I am an avid planner. I am a free-spirit; that loves positive good energy. I am a lover of consensual love (in any form). I am sex positive, body positive, non-monogamous, polyamorous, and bi-sexual human being. Oh! I also have herpes.
You see that? I have herpes, but it is not who I am.
Anyone who knows me, knows all the above; and until I decided to go public with my status, very few people knew that I had herpes. But, if they were asked to describe me, you’d get a mix of: she’s funny, she’s friendly, she’s bubbly, she’s a freak, and she likes to party. Never would you hear, “Carolyn is herpes”.
For a long time, I was afraid to speak out about my status, for fear of what people would think and, of course, the dreaded STIGMA. The stigma that says ‘only people like this get herpes, or no one will want you if you have herpes, or people with herpes should just crawl under a rock and die’- yes there are people who say such things. For the most part; I always understood that herpes is something that I have; it is NOT who I am. However, it took me a few years to finally believe that to be true and to live in that reality.
So, I write this post, with the hopes that it will reach the people that need it most. For those battling with self-love after their diagnosis, for those that feel ‘dirty’ or worthless, and for those that feel they will never find love or have casual sex again. I write this to tell you that: you are not dirty, you are still worthy of love, you will find love, and with the right person you may even find good casual sex again. The trick is, to do the self-work!
When I was younger, I used to cut myself. Never deep, never a lot of blood, and never to kill myself; I only cut to feel and have control. I started having sex at 14, and at that age my mind didn’t process, what we now call, fuck-boy behavior. You know, when men tell you what you want to hear just to get the pussy. At that age, my mind thought that, if he’s having sex with me- he must really like me (silly rabbit!). Anyway, after countless lust-filled heartbreaks I yearned to have some control. I found that control in the form of cutting. When my mother read my diary and found out, she thought I was cutting school; (since black kids don’t cut their body). When she found out the truth, she did what she had to do; and put me in counseling. For this act (in addition to giving me life) I am forever grateful. My counselor (Ms. Antoinette Rodriguez) was a much-needed saving grace. She helped me from 14 all the way through high-school. She helped me navigate my feelings and establish my self-worth. She encouraged me to be the artist and positive spirit I was born to be. She helped me to know that other peoples’ opinions of me didn’t define me. She helped me to find and love me. After I left the program I would stop by and visit her. Then, one day, due to budget cuts the program was closed. I was sad but very pleased with what she had done for me.
Fast forward a few years and toss in a herpes diagnosis, and a string of failed monogamous relationships, and I became a lost soul again. I didn’t go all the way back to square one, but I did question and doubt my identity. After my diagnosis; I was this girl who loved sex and was fantastic at it- now, who was I? Would anyone ever want me again? Who’s going to want a girl with herpes? Would I end up alone?
Too scared to go out into the world I sat on the sidelines. I kept my diagnosis quiet until I got serious and then I would tell my partners, and to my surprise, they all stayed with me. The only problem with that was, Me.
For all the boyfriends I had, post herpes, I was never fully happy. I always wanted something more; but, because of herpes and the fear of being alone, I stayed. This mentality though, isn’t just a herpes thing. Think of how many people stay in abusive relationships, or keep taking back cheaters, or stay for financial security. Staying for comfort isn’t uncommon; but leaving for peace of mind is necessary.
It was after my billionth crying series with my (X-Files series) Fuck-boy of an ex where I finally said. “I refuse to be in a bad relationship & have herpes”. Since I can’t get rid of herpes, I had to get rid of the guy.
The first step was to separate my sex from my identity. I was always this amazing human with great energy, but my fear of rejection caused me to be less than amazing. The next step was to take the time to complete me. You know the people that hop from relationship to relationship because they feel incomplete when single- we all do. I had to take the time to find the things that make me happy and whole, regardless if a man was in my life or not. That’s where exercise, marathons, and writing came in. I connected back with the people that I know would always be there for me; my family and friends. Once I became my 100% I only wanted to surround myself with people that would fill my cup over; not take from me to make them whole. I reconnected with my sexuality. I love sex, I always have loved sex. However, this time around, sex was a bonus not the grand prize. The grand prize is me: my energy, my advice, and my friendship.
Lastly, I took the moment to reclaim my sex-positive space. With this abundance of love and positive energy flowing through me and believing that monogamy may not be for me; I decided to dip my toe in the world of polyamory and non-monogamy. In doing so, I’ve been making the best connections, getting the best advice, honestly communicating with everyone in my life and, of course, having some of the best sex I’ve had in years. There’s a connection with my partners (sexual and non-sexual) that was missing before. Living in polyamory, I’m taking the time to build foundations that were often skipped over before. The openness in communicating and the ability to express my desires, with no fear of being judged is also very refreshing.
Sure, from time to time, there are some rejections (which is fine). I know that not everyone will want to take the risk, but having those moments to educate potential partners/friends/acquaintances on how to remain herpes free, after they are no longer romantically interested in me, still feels good. I am aware that when I disclose and they are no longer interested, it only means they are declining herpes and not me; because, herpes is only what I have. It is not, who I am.
Tales Of Toney 
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