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positive guide to herpes disclosure






 

 

Always Asymptomatic: My Body Has Been Keeping a Secret From Me?!

Full disclosure -- I'm that person who loves to organize things and considers myself a bit of a hypochondriac (all part of my quirky charm, people). I get my teeth cleaned twice a year, I go to the doctor annually, I eat good food, love yoga and lead a healthy, active lifestyle. Never smoked. Drink socially (because #wine). And I just found out I'm part of our little "club" after a routine blood test. Holy. Banans.

First thought: WTF?
Second thought: Naahhhhhhhh.

We're talking pure denial here because I've never had an outbreak. Not one. And as a self-proclaimed hypochondriac: trust - I check. Not a pimple, not a rash, not a suspicious spot. Nada. So here I am, a 31 year old woman who thinks life's been treating her pretty awesome ... but just found out her body has been keeping this huge secret from her. Suddenly, not feeling so awesome anymore.

I won't lie. As one of the lucky asymtomatic ones, the temptation just to sweep this emotionally (and physically) under the rug is there. But that is fundamentally not who I am. I'm someone who has always prided myself on being compassionate, caring, open-minded, and a learner at heart. Anyone in the same boat here? What do you do when it just doesn't feel real ... even when you know it is?

Comments

  • edited September 14
    Hi, Buttercup!

    First, it's good to be aware that false positives can occur within a certain range (.90 and 3.5) on IgG tests, so if you haven't seen your results in that detail, you may want to request a copy to be sure the antibody level exceeds 3.5 and doesn't fall in the range of a potential false positive.

    Next, it might help to know that you are actually in the majority in that, according to the CDC, "Most individuals infected with HSV are asymptomatic or have very mild symptoms that go unnoticed or are mistaken for another skin condition." (Source: https://www.cdc.gov/std/herpes/stdfact-herpes-detailed.htm) For HSV2 specifically, only 12.5% of those with HSV2 are aware they are infected. 80-90% of people don't notice when they become infected with HSV2 for the reasons stated above (asymptomatic or very mild symptoms mistaken for something else).

    Finally, it might help to know how very common HSV2 is, especially among women, and rates continue to increase with age. Here are a couple graphs that illustrate this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020161/figure/F1/ (The red and purple lines indicate those who tested positive for HSV2; the green and yellow lines indicate those who were aware they were infected with HSV2. You can see here how common your experience is of having HSV2 and being unaware before testing.)

    I also discovered my positive status through testing rather than symptoms and I understand what you're saying about the sort of denial aspect. Given the stigma, it can feel like the knowing is the real problem rather than the virus itself. You're welcome to PM me if you'd like to chat.
  • Hi Buttercup and Optimist
    so I have knowingly been apart of the (H) club for about two months and like your stories I also discovered my status through a blood test and I have never had an outbreak or any noticeable symptoms. For weeks I felt like I had been betrayed by my body ..... how could I have not known? Then I became angry because I had been receiving std testing annually but had no clue that Herpes was not included the normal battery of testing .... how could my doctor let me think she had tested for everything when I could've had HSV2 my entire adult life .....

    After having my break down and disclosing it to my boyfriend.... I decided I needed to know the facts. Everyday I would wake up and search for a answer to the first Herp question the would come to mind.... (I was scared that I couldn't even swim in a public pool) yes I tend to have a dramatic flare ! But the more I researched and the more FACTS I learned the more acceptance I gained for myself. I was determined to not this take over my life or ruin my relationship.....

    Now I completely understand Buttercup when you said it's easy to almost dismisss it because you and I haven't had any physical symptoms.... but I know when ever I'm around a group of people and STD's become a topic of conversation I still feel a since of uneasyiness come over me...I'm torn between trying to educate them and doing my best to erase the stereotype without disclosing to the whole world . But for me living with HSV2 is something I've decided to tackle slowly but surely... it helps that my family friends and boyfriend have been completely supportive! Disclosing to them literally empowered me and gave me the courage to actually work through my diagnosis instead of ignoring it until I maybe one day have an out break !!!! I simply decided I'm still me... nothing has changed about the person I am and the person I'm becoming my goals are still the same and having herpes doesn't change that.
  • Thanks for both those awesome replies. I think that point about "I simply decided I'm still me" is so important. I realize literally nothing in my life has changed - except perhaps a few awkward conversations here or there - yet, the time and energy I've devoted to thinking about this internally is staggering. And the reality is --- it's only because there is a stigma around it.

    I can't decide whether I'm more upset that I even know I have it, or that I'm frustrated it's a big deal socially to begin with. Probably both.

    I'm blown away by how disclosing HPV is rarely (if ever) a conversation and never considered truly taboo, yet it can cause cancer - while this funky skin thing, that has no material bearing on health, childbirth, and sexuality (with the exception of immunity compromised individuals) is such a big deal. The sheer number of people who have it, and those who don't know it, or don't think about cold sores as part of the herpes family, is almost laughable.

    Objectively, I know I haven't done anything "wrong" and that this doesn't have any weight in whether I'm a "good" person - but it sure does feel that way in a society where something so small is labeled like a big scarlet letter.

  • @Buttercup I know what you mean. I struggled for years because of the stigma, and felt like I had this deep, dark, dirty secret, due to how I believed people viewed herpes. Recently, I disclosed to someone, and after asking a few questions, he was not fazed in the least. He then went on to disclose something very personal about himself. That was the beginning of accepting myself, herpes and all. After that, I created a profile on a dating site, which included my photo, stating in the "about me" section that I have genital herpes. I got many messages from men. Some told me they appreciated my honesty, and many were not deterred at all. During that time, I also started talking about it freely with different people. I've noticed that my nonchalance about it helps others be nonchalant about it. It also helps them to be more comfortable with asking questions. As hard as it was for me to believe just a few months ago, herpes really isn't a big deal. The more I've discussed it with others, the more this is confirmed. Three men that I can think of told me that they've dated someone with genital herpes. I know it's difficult now, but when you completely accept yourself (herpes and all ;) ), how others *may* view the virus won't have such an impact on you.
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