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Dislcosure of Herpes, why does all the responsibility fall on us?

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LetsDoSomething

I'm recently diagnosed with GHSV-2 from a one night stand. My Giver was asymptomatic and unaware of her status. During that night we had a talk about sexual health, and both of us thought we were healthy. We had unprotected sex twice and I got symptoms 4 days later.  My doctor gave a visual diagnosis on the 11th day. Lab results negative for HSV-1, positive for HSV-2 a few days later. She got positive HSV-2 result the day after. And in the interim (before I realized what was going on), I passed on this "gift" to another partner, not knowing I had contracted it. She also tested positive for HSV-2.

Since then I have done hundreds of hours of reading about this. One of the most rattling things about this virus is the complete societal failure on so many fronts in regards to this disease. 

One thing that angers me is the burden we carry now. So the responsibility is on us, but who else is taking responsibility??

What is the medical field doing to stop the spread of this disease?

  • Standard STD panels don't even check for HSV-1 or HSV-2. You have to specifically ask for this test. Even my doctor was reluctant to do the swab and bloodwork for HSV when I specifically asked him to do it and had open lesions on my pubic area! How ridiculous is that? Why is not checking for HSV-1 and HSV-2 an acceptable medical practice? To me, this is a damning commentary on the outright neglect of the medical field discovering/educating/stopping/preventing this disease.

Or how about this gem:

Quote

What's more, about 90 percent of people who have the HSV-2 strain don't know they have it because doctors rarely screen for it, according to the Centers for Disease Control. 

  • Wait, so there's this huge cohort of people out there, just bumbling around, spreading this virus like wildfire. One of whom i was unlucky enough to sleep with. And if any one of those infected persons went to the doctor for an STD check, they'd come back with a "clean" bill of health, sans HSV testing. All the while infecting more and more of the population.
  • It's a known fact that so many sexually active people have this disease, yet the medical field completely neglects this on standard STD panels.
  • If so many people unknowingly carry this disease, there would be millions of people in for quite the surprise when they get tested. 

ProjectAccept breaks it down:

Quote

Around 75% of Americans carry HSV 1 or HSV 2 somewhere on their body.  That virus can (but may not) be transmitted to any surface of someone else’s body, via physical contact.  If it does transmit, there’s an ~80% chance that they won’t recognize any symptoms from the infection.  However they, too, will retain the virus for life and be contagious.

What is the government doing to research/fund/educate?

STD's are common and widespread. Yet, somehow even legislation around these issues have become politically charged. Abstinence-only education (proven a million times to not work) is still prevalent in parts of the United States, especially the South. 

Trump just disbanded his entire HIV/AIDS council.

In a word, the government is doing effectively nothing except collecting data. While spending hundreds of billions a year on a bloated military budget. Even $1 billion/yr toward research/education/eradication around STDs would go so far.

What are the asymptomatic carriers doing?

They don't know they have it. Yet we have the data to show that Herpes is incredibly widespread, so what is being done to detect and educate those with this virus?  Why aren't those who are sexually active and non-monogamous held to some requirement for regular testing? They aren't just a danger to themselves, they are a danger to others too.

What is the state of Sexual Education in our country?

In the most politically conservative states, the problems with STDs are the worst:

Quote

It’s likely no coincidence that many of those same states lack the comprehensive sexual education requirements that would help educate their residents about HIV transmission from an early age. Health classes in Texas, Florida, South Carolina, North Carolina, Mississippi, and Louisiana aren’t required to provide any kind of medically accurate information about HIV. And in two of those states — Texas and Florida — public schools don’t have to offer any type of sexual health education whatsoever.

Wildly inconsistent and politically/religiously motivated legislature impedes the conversation and education around sexual health. The education system in America is a joke when it comes to this topic.

I will admit i was misinformed and uneducated and made mistakes to protect my own sexual health. Partially due to lack of education, and partly to my own ignorance. I was sexually active for 14 years and never contracted an STD until recently. 

What is being done about the stigma?

I've found myself on both ends of this. Having a Herpes scare in a relationship three years ago showed me how the stigma really did have a profound affect on how I viewed the person and the relationship. I was not confident in the relationship moving forward so I wasn't willing to risk "exposing myself to Herpes". But I was also uneducated and under-informed about the disease and the preventative measures that could be taken.

The stigma was also at least partially created for profit and greed. The stigma is unfair and omni-present.

So who takes responsibility?

Of the 1 in 6 who have genital herpes, we are the 1 in 5 of those who are unlucky enough to have symptoms but happen to know our status.

So suddenly this enormous societal issue becomes our "problem" because we are the 1 in 5 people with Herpes that actually knows we have it. We are morally, ethically and sometimes legally obligated to disclose the "risks" to all future partners.

Who fucking cares if we become social pariahs? Nobody cares that it is a Scarlet Letter on our existence.  We aren't human anymore, we are an incurable virus. We are left alone on Herpes island. Stigmatized. Rejected by society. 

And yet, with complete and total failure on so many fronts, we as the "knowing carriers" are expected by ourselves and society to disclose our status every single time. We face the real possibility of rejection every time we go into the dating world. We face humiliation if the news spreads that we have this condition.

99.8% of the conversations I've read about this are pro-disclosure.

Quote

"We know, so we have an ethical and moral obligation to give our partner a choice before exposing themselves to risk".

So, suddenly, we are thrust into this role where we are responsible for everyone else's sexual health? I wasn't given a choice, but I should give the next person a choice. And if I don't give them a choice, I am a sociopath. Cool. 

Where is the accountability? Where is the education?

The medical field doesn't care. Government doesn't. Our Sexual Education is a joke. Asymptomatic carriers spread this virus like wildfire. Why the fuck should we care? If we take all the precaution, using protection, taking anti-virals, keeping pubic hair, reducing skin-on-skin contact, and having partners wash after sex, the likelihood of transmission is extremely low. I would never not use protection, to protect myself and my partner.

To be clear, I have not yet had sex with an uninfected partner, nor do i have any immediate plans. Just like anybody else, I'm afraid of disclosure and rejection. I know I'm not the first person to try to rationalize NOT disclosing. I'm coming to terms with the reality of this new situation.

What is bothersome to me is that I'm highly disillusioned by the handling of this disease and feel it is completely unfair that I am now saddled with this burden, forever. 

I am not at a point in my life where I want a sexually monogamous relationship. I've read HippyHerpes disclosure thread. I'm glad he's had success.

I know one of the main counter-arguments to non-disclosure is this:

Quote

How would you feel if you gave this to someone, knowing you had it?

This is where I have mixed feelings. Of course my Giver didn't know and felt terrible. But all sex has risk. Somebody who is educated about their condition can take many preventative steps to stop transmission. While those who don't know they have it pose a much greater risk. I would feel awful if somebody got it from me. Which is why I believe I will spend my life disclosing. It is the logical and moral conclusion. I don't want it on my conscience.

But my point is the handling of this by society is both illogical and immoral, and the burden falling on us is unfair.

Those of us who get this disease and are unlucky enough to know about it get hit with ALL the ramifications (social, physiological, psychological, relationships), while society as a whole turns it back on us and this issue. I can see how there would be a rather large faction of people who carry this virus and just say "fuck it, I'm going to do my best to prevent the spread of this, but I'm not going to let it affect my life or my casual relationships." You won't find those people on Herpes disclosure boards.

 

 

 

 

 

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Scooby2112

Very well written and you are right it's very difficult for everyone with it and those that have an incorrect view because they are not and will not educate themselves unless they actually get herpes.  

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Nightmare7575

The majority of Doctors say do not get tested if you do not have symptoms which I still don't understand. My main Doctor told me not to get tested and many days I wish I would have taken his advice. I think I may have got it when the medical profession thought you could only get it if the person had sores,which we know now is not true

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Blahdittilyblah

Lol the medical community doesn’t care. Had to argue with my gifters doctor because they first refused to do a hsv specific test, their medical explanation was no sores no herpes. We demanded the test be done and what do you know diagnosed correctly. If clinics on doctors tested standard there would be no more stigma quite quickly. 

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Skye249

Just to add, the 1 in 6 figure is for ghsv2 only I think. Thanks for your post - if only all doctors and the health governing bodies were obliged to read it. 

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LWestCoast

Love this post and it reflects exactly how I feel. Incidentally, many of my hsv- friends reccomend not disclosing. I think if the shoe were switched they would just hide it. Unfortunately i, like you, feel compelled to be honest. I sometimes wish I didnt have this burdensome integrity because while doing the right thing is great, we bear an unfair burden for doing so. I just recently told many of my friends while going through a breakdown due to being rejected and occasionally wish I hadnt as now I dont even really have the option of hiding it as they might find out....but it also made me feel a lot better and I have access to way more support. It is absolutely ridiculous though how much pressure is put on us while no one else takes any responsibility. I wish I could just copy ur post and share it everywhere because its bang on. Ive struggled with this ethical dilemma for 15 years. 

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Divon

Was searching for a thread like this. You are 100% correct in that it makes no sense at all to force people who know they have herpes to always disclose while not promoting blood tests in a society. Furthermore, if you do disclose to someone and have sex with that person you will of course also become the person who gets the blame if this person ever finds out they are infected.

The way I see there are only 2 options that are viable.

Option 1 which Im completely fine with is to ignore herpes till there is a good prevention vaccine. When I say ignore I basically mean dont force or expect anyone to ever disclose herpes, possibly expect them to do their best to use protection and avoid symptoms if they know about it though.

Option 2 which makes a lot of sense which is to fight the stigma and promote blood testing for herpes in regular STD testing on a global level. STD clinics could then also help with hosting dating events and support groups for HSV positives who are interested.

What is currently being done however is that all the blame and responsibility is being put on people who know their status. That is a horseshit approach and the reason why some countries choose to not take herpes transmission to the court and doctors promoting to not disclose. In conclusion, people who expect their sexual partners to protect them from herpes are dellusional beings. In the end you need to ask yourself the question, who is really the bad guy? The guy who transmitted herpes after ignoring a reccurent symptom that he never got tested or the guy who failed to disclose but did everything he could with condoms, meds, and trying to watch out for prodomes/lessions but still transmitted due to unfortunate undetected viral shedding? Should the first be excused for his ignorance while the second be punished severly for trying to live a normal life despite having an extremly overstigmatised virus that he can do nothing about?

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Poisonflower
11 minutes ago, Divon said:

Was searching for a thread like this. You are 100% correct in that it makes no sense at all to force people who know they have herpes to always disclose while not promoting blood tests in a society. Furthermore, if you do disclose to someone and have sex with that person you will of course also become the person who gets the blame if this person ever finds out they are infected.

The way I see there are only 2 options that are viable.

Option 1 which Im completely fine with is to ignore herpes till there is a good prevention vaccine. When I say ignore I basically mean dont force or expect anyone to ever disclose herpes, possibly expect them to do their best to use protection and avoid symptoms if they know about it though.

Option 2 which makes a lot of sense which is to fight the stigma and promote blood testing for herpes in regular STD testing on a global level. STD clinics could then also help with hosting dating events and support groups for HSV positives who are interested.

What is currently being done however is that all the blame and responsibility is being put on people who know their status. That is a horseshit approach and the reason why some countries choose to not take herpes transmission to the court and doctors promoting to not disclose. In conclusion, people who expect their sexual partners to protect them from herpes are dellusional beings. In the end you need to ask yourself the question, who is really the bad guy? The guy who transmitted herpes after ignoring a reccurent symptom that he never got tested or the guy who failed to disclose but did everything he could with condoms, meds, and trying to watch out for prodomes/lessions but still transmitted due to unfortunate undetected viral shedding? Should the first be excused for his ignorance while the second be punished severly for trying to live a normal life despite having an extremly overstigmatised virus that he can do nothing about?

I love this!!

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IcantThinkofaName

In the past, I have gone out on dates with several men who kissed me (or tried to) and did not disclose that they had HSV1.

 

One guy- while we were at dinner, I was looking at aspot above his lip thinkingto myself, "i don't rememebr that being there last time"

He kissed me. And then when I went to use his bathroom- there it was- the Abreva cold sore stuff. I washed my lips off in the sink. he actually kissed me when he had a cold sore!?! I wasnot happy. I did not get HSV1 though.

Another guy tried to kiss me when he had a cold sore and  I stopped him. I point blank asked him if he had a cold sore and he said Yes. I said those are contagious. He didn't seem to know that and said that he had girlfriends in the past and he had never given it to them.  Shocking!!

ANother guy lied to me about having HSV2 and had sex with me without protection, even though I asked him on two different occasions if he had any STDS. He lied to me face. He eventually told me in some shitty way. ( I somehow didn't get it then either.)

I was lucky all those times. 

BUt  luck runs out. I eventually got it from my former fiancee who I assume didn't know he had it at all.

Apparently you don't have to disclose HSV1 at all.

So if HSV1 is "the same as cold sore on your mouth but in another location" ....by that rationale I shouldn't have to disclose my HSV2 either. But I wouldn't want to be a selfish idiot like those guys that did that to me or infect anyone with this nightmare.

 I always asked  about stds  before sex with anyone. But Kissing, I never/rarely ask.

 

 

 

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Sean123

Nice post and I agree. These nonsense issues makes herpes so much easier to accept. Our docs dont test for it and oral hsv is "normal". In that case, fuck it - No point in being depressed about it..

If people sleep with me without protection knowing there are stds out there that means I am to fully blame? Fuck that; if you decide to have sex you should be accepting the risks associated with it. 

Im not letting this ruin my life. Most people will walk after disclosing and many will gossip about you. Theres no winning.

Edited by Sean123

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IcantThinkofaName
3 minutes ago, Sean123 said:

If people sleep with me without protection knowing there are stds out there that means I am to fully blame? Fuck that; if you decide to have sex you should be accepting the risks associated with it. 

we should use protection for ourselves-our own benefit- so we don't get HIV though

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Sean123

Where I live the high five is super super rare. If I wear a condom, Its not for my protection its for theirs. 

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IcantThinkofaName

 

33 minutes ago, Sean123 said:

Where I live the high five is super super rare. If I wear a condom, Its not for my protection its for theirs. 

HPV?

Hep B, Hep C?

The others are all curable so...no big deal. Hep C too but very expensive.

But come one--You don't want to catch something else. you never know , right? super rare but it only takes that one super rare time

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l.f.23

@IcantThinkofaName I was diagnosed with HSV1; however I have it genitally. I guess that you can get HSV1 genitally if you have oral sex with someone with a  coldsore. I haven't gotten a cold sore yet, however I have had 2 genital outbreaks. I personally believe that I am okay to kiss people (i even asked my gyno on multiple occasions and she has given the the ok to kiss, but you disclose before any type of oral sex). But, I still feel 100% like I need to disclose HSV1, even though it isn't "necessary". Just like you said, I don't want to infect anyone else. I'm also relatively new to the whole herpes thing, so there's still a lot that I don't understand, but we'll all get through. 

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Divon

I have no idea how some of you can say that you dont have oral hsv1 to be honest. The way I see it or at least in the countries where I`ve lived, oral HSV is just something that you have as an adult. Only way to not have it is to be some kind of ultra virgin who has barely even kissed anyone. At least if you spend a lot of time on Night clubs you are more or less guaranteed to get it from making out with randoms on the dancefloor. Therefore it is rather the case that we should be educated and aware that GHSV1 is always possible from receving oral sex. GHSV1 however is quite mild compared to GHSV2, you have to be very unlucky to be in constant physical suffering from it.

However like you say its still hsv and one individual can have a more active ghsv1 than someones GHSV2. I like the idea of educating people to treat and notice all HSV symptoms rather than promoting constant disclosure of HSV. If HSV wasnt sexually contagius but somehow still as common as it is, this forum wouldnt even be here. 

Please understand that this is all wrong, it promotes massive fear for people to get tested. Its a dilemma that needs to reach the media ASAP. A virus that causes occasional annoying skin outbreaks that is actually pretty damn hard to transmit cant isolate people like its Ebola. The medical community seems quite aware of this fact, but somehow we dont.

This approach is the opposite of stopping the spread or dealing with the virus. Its only causing severe depression from being diagnosed. I have seen a lot of posts of people explaining their abnormal herpes symptoms, nerve pain, pain during sex and so on. In my opinion they all fall into the category of non existant problems compared to a life of isolation and loneliness. Im not sure what physical symptoms could match that in my mind, but Im pretty sure it would include a wheel chair.

Edited by Divon

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Divon
6 hours ago, IcantThinkofaName said:

 

HPV?

Hep B, Hep C?

The others are all curable so...no big deal. Hep C too but very expensive.

But come one--You don't want to catch something else. you never know , right? super rare but it only takes that one super rare time

Just get a vaccine for those. It will not cover every strain but should protect against dangerous ones. Not sure if late stege syphillis is cureable btw, also a lot of other stds have strains that are extremly resistant to antibiotics. As soon as someone developes a somewhat OK therapeutic vaccine and a protecive for hsv, hsv stigma will be forgotten.

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LetsDoSomething
14 hours ago, Divon said:

Was searching for a thread like this. You are 100% correct in that it makes no sense at all to force people who know they have herpes to always disclose while not promoting blood tests in a society. Furthermore, if you do disclose to someone and have sex with that person you will of course also become the person who gets the blame if this person ever finds out they are infected.

The way I see there are only 2 options that are viable.

Option 1 which Im completely fine with is to ignore herpes till there is a good prevention vaccine. When I say ignore I basically mean dont force or expect anyone to ever disclose herpes, possibly expect them to do their best to use protection and avoid symptoms if they know about it though.

Option 2 which makes a lot of sense which is to fight the stigma and promote blood testing for herpes in regular STD testing on a global level. STD clinics could then also help with hosting dating events and support groups for HSV positives who are interested.

What is currently being done however is that all the blame and responsibility is being put on people who know their status. That is a horseshit approach and the reason why some countries choose to not take herpes transmission to the court and doctors promoting to not disclose. In conclusion, people who expect their sexual partners to protect them from herpes are dellusional beings. In the end you need to ask yourself the question, who is really the bad guy? The guy who transmitted herpes after ignoring a reccurent symptom that he never got tested or the guy who failed to disclose but did everything he could with condoms, meds, and trying to watch out for prodomes/lessions but still transmitted due to unfortunate undetected viral shedding? Should the first be excused for his ignorance while the second be punished severly for trying to live a normal life despite having an extremly overstigmatised virus that he can do nothing about?

We put ourselves in our own mental prison because of this and that’s EXACTY how society wants it. It’s bullshit. 

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LetsDoSomething

1 in 6 between 14-49 have HSV-2

out if those in 1 in 6, 87% don’t know they have it but can still transmit it. 

Of the 1 in 6 who have it, only 13 out of 100 know they have it. 

Mathematically that looks like this: (1/6) * (13/100) = ~.02 or 2%. 

2% of the U.S. population has HSV-2 and know they have it. 

It truly is a burden carried by the “chosen few” and it’s absolute bullshit as those other 87% are spreading around the virus like wildfire. 

 

 

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Divon

It seems that US and Canada have very bad laws on herpes, I feel sorry for you guys. As far as I know its impossible to take a herpes case to court in most of Europe. Probably has to be a case where someone tried to spread it to you with intention in order to go to court for it. I know that UK is an exception to that rule however. Im very interessted in knowing the laws for this in Asia and South America but googling for this is terribly hard, not much info at all. For HIV laws there are sites with clear laws for almost every country, sometimes hepatitis might be mentioned within a law like that aswell.

The way people are trying to deal with this issue is by trying to encourage individuals to get blood tested for herpes. Well that will never really work because what you are actually saying is "Hey if you are sexually active come take this test, there is a ~20% chance that you should not be sexually active anymore." It has to be done in a different way, std clinics various medical boards need to hear about the issue. People need to write to newspapers about the issues regarding how society views herpes diagnosed patients.

First step is definitely to make sure that people knowing about their condition should not have legal responsibilities that other contagius individuals have not. You could make the argument that they should get some slight punishments for not using condoms or at least punishment for having unprotected sex while knowing that they might have some kind of outbreak going on, of course they could just deny that however so that would mostly be to encourage people to be careful.

To sum it up, stop trying to let the public know how some people suffer from abnormal symptoms which makes herpes look like the most horrible virus there is. Instead, put the focus on the unfair burden and responsibility that people who have recieved their diagnosis carry and how that is destroying their lives.

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valleynovascotia
On 2/3/2018 at 3:14 PM, Divon said:

It seems that US and Canada have very bad laws on herpes, I feel sorry for you guys. As far as I know its impossible to take a herpes case to court in most of Europe. Probably has to be a case where someone tried to spread it to you with intention in order to go to court for it. I know that UK is an exception to that rule however. Im very interessted in knowing the laws for this in Asia and South America but googling for this is terribly hard, not much info at all. For HIV laws there are sites with clear laws for almost every country, sometimes hepatitis might be mentioned within a law like that aswell.

The way people are trying to deal with this issue is by trying to encourage individuals to get blood tested for herpes. Well that will never really work because what you are actually saying is "Hey if you are sexually active come take this test, there is a ~20% chance that you should not be sexually active anymore." It has to be done in a different way, std clinics various medical boards need to hear about the issue. People need to write to newspapers about the issues regarding how society views herpes diagnosed patients.

First step is definitely to make sure that people knowing about their condition should not have legal responsibilities that other contagius individuals have not. You could make the argument that they should get some slight punishments for not using condoms or at least punishment for having unprotected sex while knowing that they might have some kind of outbreak going on, of course they could just deny that however so that would mostly be to encourage people to be careful.

To sum it up, stop trying to let the public know how some people suffer from abnormal symptoms which makes herpes look like the most horrible virus there is. Instead, put the focus on the unfair burden and responsibility that people who have recieved their diagnosis carry and how that is destroying their lives.

On 2/3/2018 at 12:40 AM, Sean123 said:

Where I live the high five is super super rare. If I wear a condom, Its not for my protection its for theirs. 

are u dating again with herpes im thinking about it dating with herpes using valtrex and comdoms there

 

On 2/3/2018 at 2:09 PM, LetsDoSomething said:

1 in 6 between 14-49 have HSV-2

out if those in 1 in 6, 87% don’t know they have it but can still transmit it. 

Of the 1 in 6 who have it, only 13 out of 100 know they have it. 

Mathematically that looks like this: (1/6) * (13/100) = ~.02 or 2%. 

2% of the U.S. population has HSV-2 and know they have it. 

It truly is a burden carried by the “chosen few” and it’s absolute bullshit as those other 87% are spreading around the virus like wildfire. 

 

 

2% chance otherewise we can all go years of being single like me but im not no longer discosing im going to start dating and protect her from catching it as ive been told by doctors too do this. Why must we be robbed of sex due to such a comon virus that cant be cured. we wouldnt be spreading it. wear condoms take valtrax and we can date again, it maybe wrong but sometime after soo many years you get fed up with all the rejection i think for now on this is the only way to go nd im thinking about going back to the bar and just date again with valtrex and condoms whisch is 98 percent chance she doesnt catch it whywreck our ive over 2 Percent.the more people have i the better for us

 

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Divon

I have not started dating again no, waiting for it to calm down. Had quite a few partners w/o realizing I had it and unprotected with quite a few. Never heard of anything indicating that I would have spread anything.

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valleynovascotia
Posted (edited)
On 2/3/2018 at 2:09 PM, LetsDoSomething said:

1 in 6 between 14-49 have HSV-2

out if those in 1 in 6, 87% don’t know they have it but can still transmit it. 

Of the 1 in 6 who have it, only 13 out of 100 know they have it. 

Mathematically that looks like this: (1/6) * (13/100) = ~.02 or 2%. 

2% of the U.S. population has HSV-2 and know they have it. 

It truly is a burden carried by the “chosen few” and it’s absolute bullshit as those other 87% are spreading around the virus like wildfire. 

 

 

Yea it sucks that I can't date because i'm one of the "chosen ones".

Edited by valleynovascotia

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