sexually transmitted infections...

[AlbertFiennes]

I think Paul spoke briefly a couple weeks ago about the stigma attached to people who have chronic sexually transmitted infections (herpes in particular). I really appreciated that he said that because when I received my herpes diagnosis four years ago I was truly traumatized, shamed, devastated and felt that there were practically no resources available to me in order to work through those feelings. It took over a year for me to even begin to accept my body as sexually desirable again. Every joke I had ever made about herpes and STDs was part of the deeply internalized stigma I had to reckon with and work through. Every negative or shameful feeling I had ever had about my body and my desirability, and had seemingly overcome, returned with a vengeance. After spiraling into a depression and then finally getting into therapy, I was able to work through those feelings.

I'm just posting this here in order to create a space for others to share similar experiences. This is one of the things I find so valuable about this forum and the podcast: they hold space for people to talk about experiences that are so painful or stigmatized that they can never be brought out into the healing light of constructive, compassionate discussion.

[AlmostWell]

Herpes panic was created by drug companies. Before there was a drug to treat it, herpes was just an annoyance of sexually active people, like oral Herpes, which 90% of the human population has (It is essentially the exact same virus). It wasn't until the drug companies created ad campaigns shaming people with Herpes that it "grew" a stigma.

[AlbertFiennes]

I understand the point you are making about the pharmaceutical industry and its manipulation of what "counts" as an illness that requires treatment. That is not what I am talking about, and it is not what I am referring to with respect to my experience. The stigma and shame I attached to my experience were based on my socialization and education---all of which predated the pharmaceutical companies' big campaign to sell valtrex. I also want to clarify that while rates of infection with HSV-I, the herpes virus most likely to manifest with oral blisters has a very high prevalence as you note. The rates of infection with HSV-2, more likely to manifest with genital blisters, is less prevalent. Finally, for many people HSV is simply a nuisance that doesn't merit much attention and it is wrongly stigmatized as an infection that one should always disclose to partners and take appropriate pre-cautions to minimize the chance of infecting someone who isn't infected. For some people, the symptoms are not always a small nuisance, they are incredibly uncomfortable and shaming. I was infected with HSV-2 for many years before I even experienced my first outbreak. It was very painful, and had likely been dormant for a long time and came out of dormancy due to a combination of stress and changes in my hormone levels. A blood test confirmed both the presence of HSV-2 and the levels of the anti-bodies indicated the infection had been present for many years. I know that this is a very uncomfortable topic for people and I don't expect may will reply. I just wanted to say what has been true for me.

[oak]

Hey Albert.

Thanks for sharing.

If I can be kindly nosy, what is the next step for you? How can you grow from this situation?

[DrCatPantsPhd]

Thank you for posting this. I’m still having a hard time coming to grips with being diagnosed with HSV-II over a year ago. I had gotten a routine STD test when I became pregnant and was absolutely shocked when the nurse said I had herpes. Especially since I had never experienced an outbreak and knew that my past three boyfriends all had a clean bill of health, STD-wise. This means I had to have contracted the virus over 8 years ago, and any partner from back then are too long gone to be able to contact.

I can’t remember the specifics of my previous STD tests and why I never tested positive in the past. One nurse told me that basic tests (i.e. the ones you get from a clinic when you’re a broke college student) often skip the blood test for herpes, instead relying on whether you’ve had an outbreak or not in order to be diagnosed. I’ve since had my past three boyfriends get a blood test, and all three are still clean.

I already had hang-ups out the wazoo about sex: from run-of-the-mill body insecurities, severe issues with trust and intimacy due to being cheated on, as well as being incredibly insecure about my sexual prowess thanks to an overly critical lover. Getting the diagnosis has pretty much convinced me that I should give up on sex for good. There’s just no way I can get over the psychological and now medical hurdles I now face. Especially not with my current boyfriend (the aforementioned critical lover who cheated on me—another story). I can’t see a time where sex could be anything but confusing, hurtful and negative.

Remembering the open-minded, sex-positive teenager/young adult I used to be, I still can’t believe I got to this place.

Because I’ve yet to have my first outbreak (despite the stress and hormonal changes I experienced being pregnant/giving birth) and because my past three boyfriends are clean, I still hold out hope that this was some sort of mix-up at the lab. I’d get retested, but I’m afraid of receiving another positive result. I’d rather still have some hope.

I realize I need to get help for these issues (and more) but I’m lazy and would rather live in denial right now. Maybe one day. I hope. Can you talk more about how you worked through those feelings in therapy? What are your experiences with disclosing/not disclosing this to any potential lovers?

I don’t know if this is the kind of response you’re looking for, but it’s the only one I got. Thanks for the opportunity to spill my guts.

[AlbertFiennes]

DrCatPants,

I totally relate to all that you wrote with the exception that when I was first tested for herpes, which as you note is not usually something that is tested for in the absence of having an outbreak, my doctor told me "you have been exposed to the herpes virus." By not saying "you have herpes," I continued in the delusion that I did not have it. When I had my first outbreak a few years later, I was shocked. And shamed. And as you describe, every negative thought or belief about genitals and sexuality that I had ever internalized came welling up to the surface and I was completely overcome. It took a long time to get to a place where I could re-establish a relationship with my own body and sexual self that wasn't completely defined by shame. And that was where the healing part of the whole experience happened. Being confronted by this unavoidable "fact" of the infection, I had to reckon with all the ugly beliefs I had internalized about my sexuality and body. Despite the sexually liberated identity I had cultivated since my youth, I had held onto the shameful messages I had learned about sex and held onto somewhere deep inside: that I was disgusting, that my genitals where ugly and repulsive, that my sexual pleasure was something to ridicule. Ugh. So sad.

There was no avoiding it. And it, the outbreak and diagnosis, triggered some really traumatic stuff with respect to past relationships. That was at least the starting point for me to begin to release the feelings. I dove into the internet, searching for blogs that would talk about getting a herpes diagnosis that wouldn't reinforce all the shaming thoughts---there are almost none. Medical websites basically talk only about how infectious it is and how no unprotected sex of any kind must ever happen. Non-medical sites offer a lot of "cures" for sale. Blog posts are usually offhanded about it not being a problem or being a huge disgusting problem. Other blogs will talk at length about how it is or is not infectious, what it means, and it seems that at least some have good, kind messages about coping with the stigma.

An important part of my healing comes from connecting with my spiritual beliefs. I've learned to practice compassion for others as a means of finding compassion for myself. Compassion means accepting the truth of our situation with a kind heart. Truth is an essential component of compassion. So, my healing required me to really see the truth of the situation while practicing kindness toward myself and others. I had to let go of blame, disgust, righteousness, and just see. My ex-husband, who likely gave me the virus had an addiction to pot and had a lot of unresolved issues that caused him to be deeply insecure. As a result he lied, said cruel things, and needed other people to validate his worth. When that relationship ended, I knew I had suffered from a delusion about what was really happening in that relationship. I had changed myself to please an addict. For the years following the end of that relationship, I found my way back to myself. I read a lot of Pema Chodron and Tich Naht Hahn. I listened to a lot of dharma talks (you can download talks online from audiodharma.org or dhamraseed.org). I wrote a lot. I had to care more about learning compassion than I did about shaming myself. I had my bad stretches when I shut down a lot, ate a lot of food (who would ever see me naked again!). But the feelings were so bad I couldn't avoid reckoning with them. A book that really helped me was called "Damaged goods? Women living with incurable sexually transmitted diseases" by Adina Nack. It's actually based on a pretty extensive qualitative study that involved interviewing a lot of women with incurable sexually transmitted diseases---hpv, hsv, hiv---and learning about how they have resolved their experiences. It helped me to be curious about why I was responding the way I was. I could begin to see that my issue wasn't about the herpes, it was about wanting to cling to the belief that I was permanently unlovable, unfuckable, worthless, damaged. That belief was the problem, not the herpes, which is manageable.

About a year and a half after the crisis of discovering I had herpes, I had reached a point where I truly believed in my sexual desirability again. I posted a profile on an on-line website, no picture, and said I was looking for someone to have an intimate relationship with. I said I had hsv 2, and i also said something about what I was expecting from my partner, in addition to the use of a condom. And there were men, nice men, who replied to me. So, that is my story. I hope it helps!

[DrCatPantsPhd]

Thanks for sharing your story AlbertFiennes. It actually has helped. Just this morning I was thinking about how having to deal with telling future partners is going to be such a daunting task. And I started worrying about how those prospective lovers might be less attracted to me or view me as gross, etc etc. Then I thought about you and what you said and I thought "if she/he can do it, so can I."

I was hoping you would expand on something you said earlier: "it is wrongly stigmatized as an infection that one should always disclose to partner." What are your views on this? Do you think it doesn't always need to be disclosed?

Also, is just posting it on your online account the only way you've 'broken the news' or have you had that experience face to face? How did you do that and how did they react?

Sorry I have so many questions. Thanks again.

[AlbertFiennes]

Hi Dr.CatPants!

Sorry for the long delay before responding. I haven't visited the forum for a while. For clarification, I am a straight woman with bi-sexual tendencies. First, the point I was making about disclosure had to do with how some people frame discussion about HSV in terms of absolute disclosure versus selective disclosure. Both expectations can be loaded with a lot of negative stigma: "you must tell people to protect them from your dirty infectious genitals" or "you can selectively tell people because it is your right to privacy with respect to your infected (stigmatized) genitals). A lot of people---A LOT!---have HSV 1 (usually oral herpes or "cold sores") and don't disclose because it's not something they think of as a sexually transmitted disease. My personal ethic is that I disclose because 1) if I reject that this is a stigma for me, I can't act like it's a stigma and hide the facts about it and 2) I am not interested in any relationship that is based on me (or my partner) withholding information about my body when I want to be intimate with that person.

The first few people I told about having HSV did not want to continue a relationship with me. The first person I told in particular was unable to get past it. He was opposed to using condoms because he didn't like how they felt. He felt literally fearful of my genitals. It hurt a lot to have that reaction, particularly as it came very soon after my first outbreak and up until that point, I had thought he would be a fun person to have a relationship with. The disclosure of my HSV status really brought some things into focus for me--and this is something that I see as a sort of bonus. He had both a kind of arrogance about what he expected sexually and an immaturity about what his sexual behavior might require from him. He wanted to engage in what he believed was "no risk" sex. I say he was arrogant because this was a person with an advanced degree. I can see now that having the conversation with him was a blessing in disguise. I don't need a relationship with someone like that. The next person I told was not someone I intended to sleep with. On the first date with him I could see that this was not going to be a relationship I wanted to continue. However, I told him in order to practice. I sensed that it made him very nervous. And he said that he had absolutely no and had never had a sexually transmitted infection. Good for him. Most doctors don't test for all of them, I suggested. He said he had been tested for everything.

The upshot is that it takes time. Be o.k. with you. You need to be in a place where you can really appreciate your own lovely sexual self. Be honest about what you need and what you expect. When that is the basis of the discussion, then you can talk about a lot of things that matter and not have the discussion be focused on your HSV status alone. And if that conversation derails the connection, then that's a good thing. I recently turned 50. I have zero interest in having anymore half-hearted, not quit into it, sex with anyone.

[AlbertFiennes]

Hi Oak!

You asked a simple open question and I have not really had a clear idea about how to reply. I've shared a lot of my story in my replies to catpantsphd. The simplest answer is that the experience has ultimately led to more and better intimacy with my partner, because it has required me to be more honest and disclosing, and more thoughtful about what I need and value in a physical relationship with a partner. I'm with someone now, who is a very kind and gentle man. I love him. Our sex life is almost non-existent due to some issues he is working through relating to depression, but he is working on them in therapy and that inspires my trust. In the meantime, we are still developing a lot of emotional intimacy and at times talking about our sexual needs, desires, and experiences in a way that is actually quite healing.

[cmugs]

hi, i joined the forum so i could post on this thread because i have had issues with this and feel incredibly alone, unhappy, worthless. i have been seeing someone for a year and a half; in this time i was diagnosed with hsv2. no clue who gave it to me or when. my interest in the relationship had been waning, but i felt guilty leaving him if i'd potentially given him something like this. he is very sweet and very in love with me.
a friend told me he was in love with me, and was saying this over months. eventually i realized i had feelings for him and told him so when i was very drunk. the next week was torture, i was conflicted over how to leave my loyal and generous boyfriend, and also unsure as to whether this friend would accept me knowing about my std.
so, perhaps stupidly, i told him over text once when the uncertainty was killing me. at this point, many of my friends knew of my situation/guy dilemma, but none knew of my herpes. a few really encouraged me to go with the new guy, saying how cute and interesting he was. this only intensified my feelings.
anyway, it was all for nothing. although at first he said he was fine with it, i noticed the next day when we went to hang out he was unusually cold and distant. finally i confronted him and he told me he was worried. i saw his attitude toward me shift from longing to pity and guilt. it was so horrible, because in this shift of his feelings i saw myself shrink as a person...shift from someone worthy, coveted, desirable, dateable, into someone who was sick and sad and hopeless.

this happened this weekend. i've been drinking a lot since then; i hardly ever drink, and it's been making me sick. i can't tell anyone the truth about what happened, and am vaguely telling my friends we had a "falling out" although it is so unconvincing i'm sure and unsatisfying. i obviously can't tell my boyfriend why i am visibly depressed, suddenly always drunk or physically ill because of it, and devoid of joy. i feel a terrible combination of guilt, self-loathing, and impotent longing. i think about dying fairly often, but mostly i'd just like to erase the ugly present and be someone else.