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From secrecy and shame to disclosure, my journey (long post)

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I lived with my genital herpes secret for over 10 years. I was very alone with it.

I am now 63 years old. I had trusted someone I should not have trusted and at an age when I felt I had no excuse for this.I trusted the lover who gave me herpes, met him in my late 40s. I could not believe I'd been that much of a fool for love. And I felt so betrayed by him that I thought I could never trust anyone again, and especially, I felt I could not trust myself, my own judgment, about people.

I had discovered the herpes 3 months after the death of my lover and I think it was particularly hard to resolve the experience, to process it and move on, because the man I wanted to scream at, the man I wanted to question, was lying in a cemetery. Sometimes I still miss the guy, too. My feelings were complicated and the pain was hard to discuss with anyone.

Loneliness and depression were my world for a long time. One day I realized that a decade had gone by. It was like I had put myself in prison for the "crime" of trusting the wrong guy. I realized that no one lives forever and I am approaching that sunset horizon we all get to sooner or later. So...what was I going to do with the rest of my life?

I came to the conclusion I wanted to live, not just exist. Even if my attempts to find an intimate relationship fail, I know that just trying to connect grants me the right to re-join the human race again. I refuse to live with shame, secrecy, self-reproach and despair any longer.

None of this has been easy for me. But what I want to convey to others reading this is that: Being alive really, really beats being among the walking dead! I have been so much happier, have had so much more inner strength since I came out of the closet about all of this.

The first person I discussed this with was a psychotherapist. I needed a safe place to say the words out loud and get used to the idea that I was willing to risk the pain to seek new relationships (including friendships because, at my age, I have already lost many friends through death).

The next person was a gynecologist. She was very compassionate and, ultimately (after a fight with Kaiser to get insurance to cover Valtrex) very helpful.

Then I told a friend I have known since 1947 (we were two years old when we met). She was wonderful and couldn't believe I had been in hiding over this. She gave me a lot of encouragment and made some good suggestions.

Some weeks later--I was getting much bolder--I told an old friend from the 60s (this is very tight bond in my own generation), a good friend and former lover. who has remained a friend over these many years. He was terrific about it and also gave me some good suggestions.

After some more weeks went by, I realized how wrong I had been to hide in my house and feel ashamed of something that says nothing about me personally--it's a damn virus, not a stain on my personal character,bad luck, not a badge for bad judgment. I am hardly the first person who's ever made a bad decision and trusted the wrong person.

I also realized how much I had underestimated my friends. I have a lot of great long term relationships with some wonderful people. I did not look to them for support, instead I hid. I did not decide to face life knowing that it can be hard, that betrayals do occur, instead I tried to withdraw from the game. I accepted loneliness instead of the risk of pain. A very bad choice.

At this point, I have done something that I know most people here would not do. Perhaps this is not for everybody. But I have decided that I do not want my herpes to be a secret among my friends or acquaintances. I have authorized my friends to talk about it if they wish. In fact, I have actually encouraged them to discuss it. That way, everyone in my crowd knows about it and if I date anyone who knows me through friends, that person will already know about it. I have decided that I really do not care what jerks, ignorant fools and narrow minded judgmental people think about me. If someone has something bad to say about this, there is every chance that person will not have the nerve to say it to my face--so I won't have to hear it. And the kind of people who hear this and don't want to get to know me because of it--I don't really want to meet them anyway.

I know this would not work for everyone. But, consider...these things so often do get out anyway, maybe it's better that your friends hear it from you...? I think if more people could be open about this. the stigma would lessen. This is not exactly something I'd bring up in casual conversation, of course. It is personal. But it is no longer something I wish to go to any lengths to hide.

You know how people sometimes go snooping in other people's medicine cabinets.I dont' have many guests at my apartment, but if I do, and they see my Valtrex in my medicine cabinet, that is OK with me. In fact, I am thinking of posting a brief explanation next to the meds so they can get the whole story--make the snooping more fun for them! OK, I am kidding, but truly, I refuse to hide anymore. I want to learn to look the world in the eye again. It's the only way to really live.

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Brainyblond, That's the most refreshing and uplifting post I've read for a long time. I admire you for having the courage to stop letting herpes define your life or your options to live it. I'm sure you've helped many people by sharing your story here. Even if they choose not to freely divulge the information, you've at least given them food for thought, and that's a good thing. From one old hippie to another... thank you.

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Thank you for kind response

Thanks, Writer & hippy from Virginia. I appreciate your response. Frankly, I was afraid I would get a lot of negative, even angry responses to this. So many people get furious if anyone in their crowd talks about them or their herpes that I assumed people here would consider me crazy. My only friend at work (or, at least only close friend I'd trust) has begged me not to disclose to anyone on my job even if I should date one of them because, she says, too many people would say bad things about me and/or make dirty jokes about me and then, she says, she would be in a position of having to defend me or get mad at them--so I have honored her request and I am keeping quiet about it on my job.

We herpes sufferers really do need a good publicist!

And, by the way, I have decided that, disclosure or not, I WILL speak up if I do hear anyone make dirty jokes about herpes sufferers. It's kind of like speaking up when you hear a racist or sexist remark. It's your social duty, as I see it. Some stuff should just not go unchallenged.

Someone on this board said that she found it, in many ways, harder to be diagnosed with herpes than when she was diagnosed with cancer. Yowie. It seems, with cancer or AIDS, it is OK to admit you have it because you are (it is thought) dying!

So...do we actually have to DIE to get any sympathetic response to getting an STD? What a thought!

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Hi Brainyblonde,

I don't see how anyone would post negative responses to the courageous way you are handling this, If we all had that attitude this virus wouldn't be perceived so negatively.

I am one of those persons who handled a cancer diagnosis much better than the thought of contracting herpes, probably because it was in the very early stages and the fact that I had thought I contracted HSV through cheating.

I got plenty of sympathy when I had cancer but I doubt very much that I would have gotten any with a herpes diagnosis.

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I salute you

You certainly are a true survivor. Wow. You have really been through the ol' karmic wringer.

I guess it just shows how important community support is for us humans. Human beings are social animals. We need other people and herpes isolates us. That was most of the pain for me, the lack of intimacy, the need for secrecy leading to withdrawal from all social acitivities. It is still hard for me to contemplate the loneliness that herpes brings into my life. It has hit me in my older years which are so often one's loneliest years anyway. I am trying to fight this both within myself and out in the world. Even meeting new people socially has become difficult for me during these years of withdrawal. I have to force myself to meet people, to go out, to look someone in the eye, say my name and shake a hand. But I am doing it for the first time in years and it is like a renewal of life for me.

I am not a religious person (I'm a deist) but I am reminded of a quote from the Bible that says that each day we have life and death set before us and admonishes us to "therefore choose thou life."

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You are so right...it is a virus..nothing more. I am still cute (on a good day) funny and sexy. And rock a nice pair of shoes or one of faboulous bags!

But at 40 I can say that at 24 I couldn't. With age comes wisdom.

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