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In this Discussion

positive guide to herpes disclosure






 

This place is a judgment-free zone

WCSDancer2010WCSDancer2010 Moderator
edited December 2015 in General herpes discussion
This place is a JUDGEMENT FREE ZONE. PERIOD.

If you find yourself feeling angry, upset, judgemental .... if you feel someone is so "wrong' that you have to shame and insult them .... if you are tempted in ANY way to say anything but KIND, SUPPORTIVE, LOVING, AND NON-JUDGEMENTAL comments on here ... WALK AWAY FROM THE COMPUTER.

True, we may not always feel that we *like* how someone is being. But that is NO REASON to attack them. When you do that you not only break the trust of the person that you attack, you may well keep someone else from commenting for fear that you will judge and attack THEM.

This forum is a SACRED place where we welcome anyone who is looking for answers. And it may take us awhile to help them to understand where *we* are coming from. And they may not choose to agree. Or they may continue to question and try to counter with every reason to not agree. That is NO EXCUSE to go on an attack or to gang up on them and it WON'T be tolerated.

If you feel someone is being insulting or bringing negativity to the forum, contact myself or @Adrial, or one of the other Moderators and let US deal with it... please and thank you.

Comments

  • I agree with all of the above:) I do however struggle with something in the free downloadable book. It makes lite of being rejected. I know there's really nothing you can do about the other persons way of handling this, but it still hurts. I met a man, he has a girlfriend but he wants to introduce me to some men at his work. He felt I have so much to offer. I have no problem in disclosing my disease... And let's face the truth now, it is a disease as well as being more than JUST a skin condition. It can also give deep psiatic nerve pain. I told him no thanks.On the PS website the men I felt may make promising relationship partners were merely looking for sex.
    The whole reason I joined this site and purchase the 4 books, was my daughter sent me the article from NPR. I'm depressed, in rage over my recent rejection from a great quality man. He was nice about it, but the outcome is the same. I cannot meet men and continue to over and over and over again be rejected. I'm also told by my friends and family that I'm overreacting, I'll find someone, they were jerks for rejecting you or that I don't need companionship. Of course none of them have herpes, and most are happily in relationships.
    I do not disclose in a negative way. I usually tell men I have herpes and then we talk about it. I know all the statistics and can answer questions they may have. I've been told I'm admirable for telling and that it must be hard. It still hurts.
  • I just replied to your post about rejection... I hope it helps. :)
  • Really depressed and afraid my boyfriend will break up with me because he keeps saying I'm too negative. I feel disgusting.
  • @Toughluck

    It sounds like you may need some help with the depression. I rarely take medications but I went through a spell (not H related... just overwhelm with life) where I got into a VERY bad place. I went to a therapist and went on Welbutrin ... only needed it for about 6 months or so. I just needed something to stop the negative thinking cycle I was in.

    As for how you are dealing with things in general... post on the regular board and reach out to others. You are FAR from alone. And as a 35+ yr veteran, I can tell you, H won't stop you from having a great life .... only YOU will stop you from having a great life. Between the numbers of people with H and the meds that we have to control it, it really doesn't have to be a big deal.

    (((HUGS)))
  • @Thumper - I can empathize. I feel like a lot of people make lite of having this and say you can still have a great life and everything but I don't see it. I don't feel as if I'm being rejected by men, I understand completely that a sane person would not knowingly take the risk of contracting this. But living alone and sleeping alone do suck. There is no way around the fact that the risk can't be 0 therefore we are "wrong" for taking our Valtrex and going on with life just the way it was before this happened (pretending we don't have it). Yes, it's bad when someone is so ignorant they act like they might get it from touching you but then those people probably have other "issues" too. All we can do is wait for the cure which I believe we will have within 5 years or so.
  • @Bluebetty

    Honey - if I had held onto the hope of a cure before having sex I'd be a spinster in a convent by now ... I've had this 35 yrs and they've been promising a cure the whole time. So I hope you are not avoiding the possibility of having a relationship until there's a cure... because the FDA has a way of making it damn near impossible for many drugs to get through their system.

    You say "any same person would not knowingly take the risk of contracting this."... .. You need to go read the Success Stories. We have TONS of people on here who have perfectly *sane* H- partners. Because a *sane* person understand that **Life Assumes Risk** ... and that you get informed and then you choose what risks you will take. Every time you get in your car **you could DIE**. It's a risk we all take because of the convenience factor. If you love Sushi you could get food poisoning ... but many eat it because they love the taste.

    I'm living proof that you can have a great life with Herpes and I'm not "making light" of it. I'm telling the truth. I had a 20 yr marriage that ended amicably. I've had two 3 yr relationships since then with *SANE* H- men. I've had a number of other shorter term relationships, most of which just ended because of incompatibility. I have 2 lovely daughters. I have a great Massage practice. I Swing Dance and Hike and do all kinds of great things. I'm currently single but right now I don't have the time to date as I'm moving my father in with me (literally in Fla now packing him out to move him to NY with me!)... Talk about Deal Breakers! Anyone who dates me right now needs to be ok with my father being in my home and taking a lot of my time. Herpes be damned... try having sex with your father in the next room! LOL

    There is no way around the fact that the risk can't be 0 therefore we are "wrong" for taking our Valtrex and going on with life just the way it was before this happened (pretending we don't have it).

    NO ONE here will tell you to take your Valtrex and go on like you don't have H. Our policy here is to ALWAYS disclose. To ALWAYS give the other person CHOICE. And to say someone is "wrong" is to JUDGE them ... and this is a Judgment Free Zone ... so when we have someone come on here who either has had sex without disclosing or who is struggling with the concept of disclosing, ***we don't judge them*** BUT we do coach them and make it clear that our policy is to disclose and we will always encourage people to disclose.... while also being empathetic to their struggle with the fear and pain they are experiencing with the disclosure process. It's often a delicate balance but if we are to have a SAFE place where people can come and request support, love, and advice, we *MUST* keep our judgements out of the space.

    If you are struggling with having a physical relationship, with the risk of passing it on, Think of it this way...

    **I assume you drive a car
    **and I assume if that is correct, you may occasionally drive your friends or family somewhere
    **And you ALL know there is ALWAYS a risk of a car accident no matter how careful you are
    **But you drive them anyway, right? Do you obsess day and night that you might injure/kill them every time they get in your car? I doubt it.
    **Why is the possibility of passing on H any different? At least it won't kill someone!!!

    Think on it :)


  • Bluebetty Guest
    edited August 2016
    I just don't think you can ask someone to risk getting infected with a life altering disease. Many people have died doing something where they thought that would not be the outcome. If I knew the person I wanted to have sex with had herpes and I didn't have it, no way would I expose myself to that. That was the reaction of the person I was with when I found out. I haven't heard a word from him since. It isn't rejection, it's him having good sense (although he's still taking unknown risks with other people). I understand the policy here, but I also think this shouldn't be a "death" sentence for people's social lives and that anyone having casual sex should know what the consequences could be and blame no one but themselves if they catch it.
  • Anyone who has casual sex *should* understand that they are putting themselves at a MUCH higher risk of an STD ... it kinda comes with the territory. AND, again, there's a study that showed that those of us who know we have H are FAR less likely to pass it on as we are much more aware of our bodies and if we are responsible we will decline to have sex if we *might* have anything going on down there.

    A car accident can be pretty "life altering". But you drive people anyway. So how do you see that as any different than from having sex with someone if you have H? As long as they know the facts and understand the risks ... AND you are a responsible partner and decline sex (or at least, anything that includes contact with the area of your OB's .. H gives is a great opportunity to learn other ways to play!) ... then it's not about "asking" them to put themselves at risk ... it's about giving them CHOICE.

    Again with the car analogy, a responsible driver maintains their car, insists you wear seat belts, and drives within the laws (ok. most of us speed a bit or whatever, but I'm going to say you don't take unnecessary or irresponsible risks) ... a responsible H carrier makes sure their partner is well informed, that they use condoms (at least until you are monogamous and the other partner CHOOSES to be ok with not using them) and perhaps you take Valtrex. So that's your "maintenance and seat belts" as it were. So why deny both of you the chance for a great RELATIONSHIP as long as you are being responsible and careful?

    As I said, there's a study (will put the link below) that proves that those who know they have H are at less risk of spreading it.... so in a weird way, by denying a partner the opportunity to have a sexual relationship you *could* be said to be putting them at a higher risk if they went off and had sex with someone who didn't know they were a carrier.

    And I'm not saying you can't have your POV on this... but I've had this 35 yrs and I've had some AMAZING partners in that time who were H- ... and it woulda SUCKED if I waited around all this time for a cure/vaccine. So my point is, please don't get attached to waiting for cure to consider a relationship. It the *right* person comes along, at least give them the chance to see it there's enough there for a full relationship. The "good" thing about H is it gives us the excuse to slow down the progression towards sex so you actually get to know the person better first, and that's not a bad thing at all!

    http://m.jid.oxfordjournals.org/content/194/1/42.long Knowledge of Partners’ Genital Herpes Protects against Herpes Simplex Virus Type 2 Acquisition
  • I don't know how this could be equated to a car accident. A car accident can kill you, do nothing to you, or everything in between. But unless you've been maimed, you heal. Even with PTSD, you can heal. And if you are maimed, and deal with the fallout of it every single day, people look at you with empathy or sympathy and help you. That doesn't happen when people find out that you have H. There's no forgiveness or understanding. There's nothing but judgment. People automatically assume that you "whored around" and that's how you caught.. not that you were in a relationship, or were assaulted, or whatever.
    If I didn't have this, and the person that I was going to be with did, it's doubtful that I would want to have sex with them. It would have to be a beyond phenomenal relationship for me to even consider it. I can't blame others for feeling the same way.
  • WCSDancer2010WCSDancer2010 Moderator
    edited October 2016
    @DrNoLove
    DrNoLove said:

    That doesn't happen when people find out that you have H. There's no forgiveness or understanding. There's nothing but judgment. People automatically assume that you "whored around" and that's how you caught.. not that you were in a relationship, or were assaulted, or whatever.

    Uh - no.

    I came out on FB about my status to over 1,000 people when I decided to become an advocate - NOT ONE judged me. NOT ONE said anything negative or hurtful to me. NOT ONE assumed I had "whored around".

    You say *you* wouldn't date someone if it had been the other way around. So I would suggest that you are projecting your previous beliefs on everyone else... that you feel everyone would act the same as you would have before now.

    I have personally also dated and had sex with several men who are H- ...I'm not a serial dater but there have been *enough* for me to feel I can speak from experience as well as what I have seen time and time again on here. I actually put my H status on the POF and OKC profiles when I had it up and had plenty of men who contacted me to say they were H- but wanted to meet me anyway ... ***because my honesty showed I had integrity*** ... and they saw that as a valuable asset in a potential partner.

    I strongly suggest that you read the Success Stories and see how many people have found the DEEPEST love they have ever experienced ...usually with a H- partner ... since getting herpes. In part it's because they slow down the dating process and choose better potential partners. In part because H acts as a great Wingman (if the person acts like you are a whore for being honest with them and caring about their health and right to know, doesn't that tell you something about them?) so you get past partners who might have an ugly side you might not see until you are really committed to them. So when they DO find that person who loves them ***Unconditionally** they really recognize it for what it is.

    Love and Sex are risky. Period. Anyone who thinks they are not are living in cloud cuckoo land. The CDC says ANYONE who is single and sexually active is highly likely to get at least one strain of HPV in their life. 80% of people have at least 1 strain of herpes (60% of young people have oral HSV1 by the time they are young adults from other kids sharing drinks with full on OB's). Both are incurable .... so truth of the matter is pretty much everyone will get one or the other or both by the time they are in mid-life. That's just plain FACT. And anyone who gets on their high horse about it and tries to make you feel bad for having an STD isn't worth having in your circle of friends (There's that Wingman again!) Don't need any of that negative shit in *my* life!

    The *point*of my reply was that we know that we could always be in a car accident yet we drive anyway. We don't know if our trip will get us to our destination, the ER, or a morgue. But we drive anyway. And we do what we can along the way (I HOPE!) to stay safe and keep our passengers safe. We don't drive with a leaking brake hose, or faulty power steering. Just as we don't have sex during an OB ... and we refrain or figure another way to play when in doubt and *might* be having an OB just as one might take another mode of transport when we need to get the car to the repairman.

    Sure - *IF* you are not maimed, you can heal. But what if you are maimed from a car accident? I'm sure you'd choose H over paralysis any day, even with all the "sympathy" for your auto injury.

    The bottom line is you have a CHOICE. You can choose to allow your past beliefs about STD's to permeate how you believe people *should* treat you now. Or you can live into how you would want/expect people to treat you now.... exactly as they did before ... to only have people around you who love you unconditionally. Who are willing to get educated if they don't know what it Herpes is so they can empathize with you. Who lift you up on the days that you are determined to beat yourself down. Why the hell would you want anyone around you who would accuse you of "whoring" around? What kind of "friend" is that? So use this to help you to choose better friends and lovers.

    The alternative - hiding in your secret and believing *everyone* will now see you as a slut or whatever - doesn't sound too great to me....

    Maybe this video will help you to understand what I'm saying :)



  • I have heard all of this stuff ad nauseum.. the stories.. I've seen this video at least a few times. I've read the statistics. I've read the success stories. I've even seen a lot of the threads out there.
    None of that changes anything.
    Because what is going on here in the forum, is NOT what is going on out in the world at large.

    If this is supposed to be a judgment free zone, then I should be able to share MY opinion and MY experiences without getting flack. That's what I did.

    There IS a stigma - whether you/we like it or not. People typically assume that someone that has H has gotten it by being promiscuous (yeah, I used that word). That's where they go first. And sure, maybe they know you and know you're a good person, or that you don't sleep around, or are responsible, or maybe they don't care one bit. That is not typical "society". That is YOU.

    So forgive some of the rest of us if all of the people we are surrounded by aren't so enlightened or kind. Some of us REALLY hurt because of this.
    Not even remotely sorry... actually....
  • Honey, I'm not giving you flack. I'm just giving you my opinion AND 40+years experience with H. I kinda might know a *little* about living in the world with H. :)

    Yes, there is stigma. There's also stigma with many things: Obesity, Bankruptcy, the crazy Mother-in-law, skin color, religion, etc. I personally won't date a man with young kids... it's not a "stigma" but it's certainly a "deal breaker" for me. And H will be a "deal breaker" for some. But NOT all! I'm also very cautious about a man who doesn't have a secure financial base. Not rich... but I want a man who can carry his own financial weight because *I* can't support 2 people on what I earn. So someone who has been through bankruptcy would have to show me they had sorted that part of their life out... and for some, THAT would be a total deal breaker. I have coached people with illnesses like auto immune disorders or mental illness (depression/bipolar/etc) that ended up being the thing that caused more strife in their relationship than their H diagnosis. Point being, there's a lot of things that people can find that are deal breakers/negative/stigmatized. H is just one more on that long-assed list.

    And I repeat: you seem to think *all* people assume you were promiscuous if you get H and I can tell you from personal experience.... its just plain not true. And if you *are* surrounded by people who are ugly or ignorant, maybe this is a good time to look for new friends? Just a thought. I know I have let go of plenty of people over the years who have shown me their intolerance and judgement ...

    Those 1000 people on FB - most are my "dance friends". I'm a Swing Dancer so I meet a lot of people at dances and we "friend" each other to keep contact about dance stuff. So odds are there are intolerant people in that group. In fact, the recent political crap has shown me MANY who are intolerant (on both sides of the political spectrum). Yet those people, who see my occasional STD postings where I put out info to educate them, still dance with me, talk with me, and treat me EXACTLY like they did before.

    Again, I'm trying to help you here. I've seen and been through a lot with H but *most* of it was self inflicted. And if someone WAS ugly towards me? Well, I'd just thank them for letting me know up front that they are an asshat and walk away and not allow them into my life. There are billions of people on the planet. Why do I need asshats in my circle of friends? And the rest? Who cares what they *think*. I have learned to be ok being me, H and all. I've had several H- BF's. I know *from experience* that there are many, many amazing people out there who love me no matter what. And I *hope* that in time, when you are not hurting and dealing with the newness of the diagnosis, that you will come to the same place I am in now.

    An no need to be "sorry" - my feelings are not hurt by your words ... I get it. You are pissed off and scared and confused and it SUCKS right now. My sincere hope is you will manage to work through this (most do!) and come to a place of peace. Just give yourself time. Time heals all wounds.... even Herpes :)
  • Bluebetty Guest
    edited October 2016
    I don't think it's about people think you whored around - I think people just don't want to get infected. True, a lot of people have their head in the sand and assume it will never happen to them. But if you are one of the unlucky ones that lost the lottery, you just have to accept that you are going to find people you are very attracted to you blowing you off, like I did and it's awful. While there are people in the world naive enough to say "sure, I'll still have sex with you", it really isn't fair to take advantage of that, imo.
  • Bluebetty said:

    I don't think it's about people think you whored around - I think people just don't want to get infected. True, a lot of people have their head in the sand and assume it will never happen to them. But if you are one of the unlucky ones that lost the lottery, you just have to accept that you are going to find people you are very attracted to you blowing you off, like I did and it's awful. While there are people in the world naive enough to say "sure, I'll still have sex with you", it really isn't fair to take advantage of that, imo.

    Sure - someone may "blow you off" once they find out you have H. I've walked away from men who hid that they have kids (I'm in my 50's and out of that phase, and made it clear on my profile) because they *hoped* I'd be ok with it anyway. No offense but at this point of my life I'll take H over kids... I can control it better and it doesn't stop me from doing anything...LOL

    Point being.... there are DOZENS of reasons someone might "blow you off" as they get to know you... medical issues (I hear this all the time... people who tell a potential partner they have some condition and the person chooses to end it there), Financial issues (living with Mom because they lost their job, past bankruptcies, etc), psycho family members, lol. Herpes is just ONE of many, many potential deal breakers. Rather than seeing it as awful, how's about looking at what things have made YOU walk away from a potential partner... be HONEST with yourself. I'll bet there's been something *far* less life altering that you just decided you couldn't live with... and it's ok. We are all entitled to choose what we will bring into our lives.

    Saying someone is "naive" if they say they will have sex with you is soooo off base. Again, IF you do your part right (make sure they are informed with FACTS), then they are making an informed choice... and that is not naive. And that is not taking advantage of them. If they are an ADULT you have to trust them to make ADULT decisions.

    Now, if you *choose* to not date because you feel you don't want to risk it, that's ok. But please don't infer that others are "taking advantage" of people if they date a H- person as long as they disclose and inform. If *everyone* with H didn't date H- people, you'd actually be in the majority. *Most* people already have at least 1. They just don't know it....
  • I just learned I was positive today. Though I suspected, a culture takes 1 week to get back. And still it's like a slap in the face. As this is a judgment free zone I'm going to tell my story.

    Ive been dating a gent for 6 months. (Let's call him Fred) He's military and got deployed, When he left we agreed to make it open till he got back as long as the honesty was there. And testing took place like it did with him.

    I met a gent (let's call him Joe). He was respectful and sweet. We connected. We decided to have sex so we both got tested first. We shared results. Both negative. But I didn't know tests don't include HSV. After dating this guy for three weeks we had sex. He was an Asymptomatic carrier. Fourteen days after to the day my first outbreak.

    I am devastated. I had to tell Joe and he called me a whore. Told me I shouldn't have slept around. Fred and Joe the only I've been with all year. And they were both clean or so I thought. Even though I was insulted and hurt already I wished him the best and told him to get tested and have a blessed life.

    What was more painful was telling Fred. I know he's not infected but I didn't want to spread it so I told him as much as I truly cared for him we can't make love anymore because I could spread it to him. He had questions. And I answered them and he was kind. He wanted to stay friends. But I politely told him. My heart is breaking and I feel dirty and beyond embarrassed. So I told him goodbye.

    I HATE THIS AND I HATE MYSELF. I FEEL LIKE A WHORE AND FEEL SO TAINTED.
  • @Sassyhart

    First - hello and welcome! Glad you found us!

    So - right now the only one here judging you is yourself... and that's pretty normal at this stage of your diagnosis because our society doesn't educate us well about the facts when it comes to sex, STD's and HSV in particular.

    Quick note about me: I got HSV1 oral as a child (60% of young children get it from other kids in childhood... I was maybe 2 or so when I first got it). I got HSV2 on my FIRST sexual experience at about 17. Talk about shitty odds, eh? I'm ...well... lets just say I'm well past 50 now, and so I've lived my whole sexual life with BOTH kinds of HSV. You are concerned about passing this in and that's the responsible way to be... but the truth of the matter is that those of us who KNOW we are carriers are actually less likely to pass it on than the asymptomatic carriers (like your Joe). 80% of carriers are asymptomatic ... so odds are pretty much anyone that is at all sexually active has/will be exposed to a carrier or carriers in their life. And sometimes we just plain lose the crap shoot.

    80% of people have one kind of herpes or other. Given you can pass oral HSV1 to the genitals through oral sex, the majority of us are in the Herpes boat.... the problem is *most* carriers don't know they have H. And thanks to really abysmal sex ed and pretty much no education from our Dr's and health care system, that ignorance isn't going away any time soon.

    My point is, if you think you are dirty and a whore, odds are most people around you are dirty whores as well... most just don't know it... lol.

    Right now, you need to give yourself time to adapt to your new "reality" and you need to get educated about the truth concerning Herpes. You need to talk to people who are further along in their journeys. And I suggest strongly that you read the "Success Stories" ...because it doesn't necessarily have to be over between you and "Fred".... there are many, MANY couples where one is H+ and the other is H- . There are suppressive medications that you can take and we just learn what our prodromes, (pre-outbreak warning symptoms) are.... and the kinda "positive" thing is that an outbreak gives us the perfect excuse to learn other ways to get our freak on with our partners.

    I suggest that you start with the links below so you can get some accurate info and hopefully some clarity about the reality of Herpes so that you can start to let go of your self-judgement and shame. And be patient with the process.... you just got shocking news and it takes awhile to become educated and adjust to the small changes we have to make in our lives to accommodate this virus. The wonderful thing is that you are here among friends and people who will walk with you through this.

    (((HUGS)))

    http://projectaccept.org/who-gets-hsv/

    Handouts + disclosure e-book:
    http://eepurl.com/b4IPP

    Herpes facts video
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