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The hardest part is loving myself

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Hello everyone!


Long-time lurker and first-time poster. I’ve had these thoughts swimming around in my head for a while, and I want to get them down.


My story: I’m in my early 30s and female. I contracted oral HSV-1 about a decade ago, possibly during study abroad in college. I freaked out and thought my world was ending, so much so that my pediatrician told my mother to take me to an infectious-disease specialist. The doctor prescribed me Acyclovir since I was in tears the whole visit and “it was obviously a big deal” for me. I couldn’t understand how it wasn’t a big deal for him. No one I had ever known had cold sores.


I was in a long-term relationship at the time with someone who had immigrated to America as a teenager. He said cold sores were nothing in his home country, and he made me feel better. We broke up after three years and a decent amount of unprotected sex because I found out he was cheating on me with at least one of my friends.


Fast-forward to two years ago, and I’m at my annual gyno checkup. I tell her to run the full STD panel (even though I haven’t had sex in years at that point), and why not include the IgG blood test for herpes? I mean, I already know I have it, right?


A week later, the receptionist very dryly informed me I’d tested positive for both HSV-1 and HSV-2…excuse me? That day, my world stopped. I cried at work, I cried at home, and I continued crying for many, many weeks afterward. How the hell did I have genital herpes when I’d never even had an outbreak? Did my ex-boyfriend—my first and only boyfriend—get it from one of the girls he cheated on me with? Did he have it all along, and did he know if he did?


In all of this, I learned a surprising fact: While crying on the phone to my parents after that recent diagnosis, my mom told me she has GHSV-2, and my dad said as far as he knows, he’s never contracted it. My mom didn’t tell my dad she had it until after they were married (!!!), but I think that’s a product of a different time—the 1970s—and people not viewing it with the enormous stigma they do now.


This year, after not dating anyone for 10 years, I decided to take the plunge with a friend of a friend. He seemed sweet and told our mutual friends he really liked me, but I was wracked with anxiety because it was my first time disclosing to a partner (only a few close girlfriends know). He took it decently well except for a few ignorant comments like “Well, I’m clean” and “I guess I can’t go down on you,” even though I explained I’d never had an outbreak, I’m on Valtrex, and that’s not the site GHSV-2 prefers. I encouraged him to do his research; I doubt he ever did.


I broke things off with him after three months because he became cold and distant. He’d turn his head away from me in bed after we’d have sex, he’d freak out if the condom slipped off or broke, and he responded to my gentle verbal guidance of what worked for me with a frustrated “Do it yourself, then.” In short, he turned out to be a jerk, and I know I deserve better than that. If herpes was the reason he didn’t want a relationship, I wanted to tell him that sleeping with me was just about the stupidest thing he could do. (I didn’t.)


This brings me back to single again, which I’m OK with—it’s how I’ve been for the past decade. My problem is what happens when I start dating someone. I feel like disclosure needs to happen so early in the process, no one will ever see me as anything but herpes. I will never get to find out if I have physical or even emotional chemistry with someone before I have to disclose. I also feel like I’m trapping or tricking someone by getting them interested in me and then dropping this on them.


I’ve tried mindfulness techniques where you acknowledge those thoughts and let them go, but mine don’t seem to go away. I know I should consider myself lucky—minimal cold sores, zero genital outbreaks—but I can’t help returning to that dark place again and again. I believe that if the situation were reversed and someone disclosed to me, I don’t think I would take the risk. So how can I possibly expect someone to accept me?


For those of you who have regrets of asking for the blood test and finding out something like me, do those ever fade? And for those who’ve dealt with this longer than I have, how do you come out on the other side? When I get a cold sore once or twice a year, my life is ruined all over again, as if it was the very first time. It's a visible reminder that I have this disease for life.


In a way, I should be grateful: I already know my status. Herpes will never pop up and surprise me. I also get to give future partners the choice I didn’t get to make. I’ve been able to educate the friends I’ve told, and there’s quite a bit of misinformation out there. There are good days where I have positive thoughts and I truly like myself. But on bad days, my brain tells me that no matter how smart, accomplished, strong, pretty, or good of a person I am, I will never be more than herpes.

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@gargatron468 I'm so sorry you've struggled so much with this. I hope you can reach a point of acceptance because I think that will make a difference in how you feel about disclosing to others. I can imagine that it would be hard for me to disclose if I thought it was something I would not accept myself if the tables were turned.


I do remember when I was first diagnosed and disclosed to someone I had already been dating, I was very conflicted because part of me wanted his acceptance and the other part wanted to push him away and take his risk away. We broke up and I spent a lot of time educating myself until I was able to kind of set the stigma aside and truly understand how very, very common it is. It also helped me to understand that pushing someone away was not saving them from risk because they would continue to have sex with people, most of whom have HSV1 and many of whom HSV2, just without a diagnosis or a feeling of obligation to disclose. Taking an antiviral daily also helped me feel like I was doing what I can to minimize risk for a potential partner.


I also tested for peace of mind and was surprised to be positive. Unlike you, I'd had many partners in my life, but lots of people with HSV2 have had very few partners. In a large study of 14-49 year olds, 5% of girls/women with a history of ONE partner were infected with HSV2, 19% of girls/women with a history of 2-4 partners were infected with HSV2, and 37% of girls/women with a history of 10+ partners were infected with HSV2. So there is a correlation with number of partners, but you can see that it is quite common even among women with a history of very few partners. As for HSV1, most people contract it by the time they reach adulthood, many between the ages of 6 months and 3 years old. Some people never have a cold sore, some people have one cold sore when they become infected and never again, some have them once or twice a year as you do, and some have them very frequently to the point that it affects quality of life. Same as with genital herpes. By the time people reach their 30s, more than 80% have contracted one or more types of herpes, but most have no symptoms or very mild symptoms that are not recognized as herpes. Hopefully that wasn't information overload, but I'm hoping an understanding of how truly common and pervasive this is may provide some relief.


I did regret testing, yes. I was angry at myself for making that choice and angry at my doctor for not setting my expectations before testing. That anger and regret lingered until I started disclosing to people and discovered most people were very accepting. I still have mixed feelings about it. I'm grateful I have the opportunity to reduce transmission risk due to the knowledge of my status, and some disclosure conversations have had unexpected benefits in the sense that prospective partners will often share something intimate with me in return. And the way they react gives me insight into them, how their minds work, how they treat others (regardless of whether or not things progress physically). But there are still times when I wish I was among the 87.5% of HSV2+ people who are undiagnosed and feel no such obligation to have these conversations. It did get much, much better though.



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@optimist Thank you for your reply! There are good days where I have the attitude that it's just a common skin condition like eczema, people will be fine with it, and it's only one awkward conversation I need to have — with no outbreaks to worry about after that. I guess in a way it's like grieving...I just have to keep going until the good days outnumber the bad days. I do appreciate your statistics, though! It makes me feel a lot less unlucky about contracting it with my first partner.


I tried seeing a therapist recently, and her response was "Can you find an online support forum or something like that?" rather than actually digging into the root of my problem, so perhaps this is the best support I can find. I definitely think about it much less when I'm not dating or actively seeking to date, so I get peace during those times.

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  • 2 months later...

I also found out through a blood test. I've had irritations down there but never knew that was what it was. Ive never had full blown outbreak. I try to tell myself I'm lucky because of that. Or I should feel lucky that I'm not fighting cancer or that my child is healthy. I try to be positive about it but it is hard. I feel the same way about a lot of things that you do. I found out in 2012 and have not been able to date/ have sex since then. I just can't see myself disclosing and I would never sleep with someone without telling them first. I find myself feeling angry a lot which I'm trying to get over because I can't live like that anymore.


I have also gone to counselors. Three of them but obviously I'm still struggling so they didn't really help. I am female late 30's. My ex did not get it from me (thank God) because I could never live with myself if I knew I had passed it to someone. I couldnt get over the depression and he couldn't take anymore so he left. He's had two more relationships since me and I just feel angry that he gets to move on and I can't. I know it's not his fault but how will I ever find true happiness if I can't love myself and be happy? I think that's cool that at least your parents know and you have someone close to talk to. I don't tell anyone because I'm so scared of it getting out.


Thank you for posting. It at least helps me to feel not so alone and that there are others feeling the same exact way as myself. It's not something you can turn to just anyone to get help/ advice on.

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Welcome, @gargatron468. I related a lot to what you said. I've had herpes for over 20 years (HSV1 with no symptoms and HSV2 with mild symptoms I didn't recognize as herpes). I didn't get the diagnosis until a year ago.


I have mixed feelings about being tested. I do sometimes long for the days when I was blissfully ignorant. At other times I'm glad I tested because it was the right thing to do (checking my STI status when I met someone new after my divorce--a relationship which fizzled soon after) and because I've really grown as a person from having had this challenge.


Mostly though, I keep coming back to the fact that now I know and I can't change it. Just like I can't change having bunions or spider veins or fine hair. When I used to joke about my imperfections, I'd say that "it's all part of the awesomeness package" that is me. All of my awesome qualities are lumped together with my imperfections. It's a package that someone is going to have to be okay with if they want access to the awesome parts of me. Now herpes is part of that awesomeness package too!


While I've made tremendous progress in the past year, loving myself is still the hardest part. I have mostly good days and fewer bad days, but it's still an ongoing practice. And for as far as I've come and as much as I've learned, I too don't know that I would take the risk if the roles were reversed. I feel terrible even saying that! I just try to remind myself that we all make our choices based on our own experiences and beliefs. And that I can't assume someone else wouldn't take the risk just because I might not.


When I met with my post-divorce therapist a few times last summer, I was telling her how frustrating it was that I could feel so much better after just a few sessions with her, versus all of the things I had been doing on my own the previous seven months. What she said really stuck with me. She said even she can't always do it on her own. We need other people to heal. Maybe that's what your therapist was getting at when she suggested a support group. I know I had really withdrawn from people in general after my diagnosis, and becoming more social (even in situations that have nothing to do with herpes), plus being more active on these forums, has really helped. {hugs}

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