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To Tell or Not To Tell


Feeling Normal Again

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I see a lot of conversations on these forums I disagree with or find just too confrontational to jump in. 

But disclosure is one that makes me want to stomp and scream. 

I don't mention all the details of my case, mainly because I don't want to terrify others. So I leave it at, I had bad, severe, or extreme symptoms. 

Lately, I read through some of the post with common questions asking should disclosure be an issue if one is outbreak free. And similar common questions.  

I'm really truly happy for those of you who have never had an outbreak or just a mild skin condition. I wouldn't wish worse on anyone!

But there's no guarantee that the person you pass it to, will end up with just a skin condition or outbreak free.

I caught from a guy who knew, and didn't disclose, because he didn't think hsv was a big deal.

I, on the other hand, spent my first year after contracting in and out of hospitals. Mine developed into hsv2 induced mollarets meningitis. I went from healthy, organic vegetarian, athletic, active female to a bedridden crippled creature in a matter of about 3 months.

Over a year of 24/7 excruciating stabbing head pains, eye, jaw, and tooth pains, rockhard painful neckw/knots, ear/mastoid pain with swelled hard lumps on the side of my face/head, extreme light sensitivity, crippling lymphatic issues, nausea, stomach pain and severe bloat, joint pains in hips and knees, couldn't walk for over a year, couldn't hardly move my head.

Needed help to bathroom where my nonstop constant sores had me in tears. 

It may be a mild skin condition for some, but I call it a incurable std that can lead to a living nightmare.

DISCLOSE!!! Don't chance ruining someone else's life due to a minor skin condition! If I'd known, I never would've thrown the condoms out the window after we were living together in a long term (what I thought was safe) monogamous relationship.

Just my update...Doing much better for last two years, since finding a natural regimen that works for me. (Not posting it here, I feel like a broken record on repeat in these forums). I will deal with meningitis the rest of my life, and if I stop my supplements, the pains all start up again. I have to treat my symptoms, really keep immune system up, and keep hsv completely suppressed!!!

 

 

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9 minutes ago, Taintedgirl said:

I’m so sorry *cyber hugs* I support the disclosure movement 100%

Thanks, it just frustrates me sooo bad when I read through the posts where people are trying to rationalize or justify not disclosing. And the posts always read the same....

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And it's not that hard to disclose to love or sex interest. I thought it was going to be awful. I didn't want to date and played terrible scenarios out in my head on having to tell anyone. It was so much easier than I'd imagined.

The worst someone can do is reject. Rejection happens everyday, everywhere even to people who are clean (std free).

Even when I was young and beautiful, and before hsv, I got rejected. It's just part of dating and/or playing the field.

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21 minutes ago, Feeling Normal Again said:

And it's not that hard to disclose to love or sex interest. I thought it was going to be awful. I didn't want to date and played terrible scenarios out in my head on having to tell anyone. It was so much easier than I'd imagined.

I think may be your beautiful or lucky.

Same will not work for every one.

But I agree with you about disclose.We must always think about other person beautiful life.

 

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Thanks, I actually had decided to give up on dating and relationships. I've never minded being alone and do not feel the need to be in a relationship! I can take them or leave them.

I did have someone persistently pursuing, the whole time telling him not interested. I finally started caving and hanging out as friends. Then told him I am broken downstairs, I'm never having sex again; it's shut down, move on and find someone else. He kept pursuing, and I finally told him I can date, but sex is off limits. I said my mouth and hands are clean but no penetration of genitals and disclosed. Told him I'd understand if he walked away. 

He happened to stay... We talked about the risks, he said we can be careful, and that I was worth the risk.

I guess I was lucky. But I also think the old saying is true "when you quit looking is when you find."

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Alright I think its important to say that what happend to you is a very unusal reaction. Perhaps the most extreme that Ive read so far.  But yes very scary and alarming either way.

You have a reoccuring meningitis? How does that work? Think you might be the first one Ive heard of with that.

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I am sorry for the awful experience you have been through. Whilst Meningitis can be associated with HSV and Mollerets specifically. These symptoms and outcomes are so rare and Meningitis is not a HSV infection. It is attributable to multiple virus. Meningitis is a freak outcome which is very very very uncommon.

99.9% of people do not experience this and should realize this is not the general reality of having HSV.

But yes, you should disclose.

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19 minutes ago, Divon said:

Alright I think its important to say that what happend to you is a very unusal reaction. Perhaps the most extreme that Ive read so far.  But yes very scary and alarming either way.

You have a reoccuring meningitis? How does that work? Think you might be the first one Ive heard of with that.

I know it's very very extremely rare. On regular hsv forums, I've honestly only come across two others with hsv induced meningitis. On meningitis forums, a few more, and then I'm in a mollarets meningitis support group with only about 500 people worldwide. 

Sorry, for the rant. It just sucks, and I get frustrated seeing people not wanting to disclose and calling it just a skin condition, it may be for most, but not for a rare few. And no one knows if the person they pass it to will be a rare case.

My symptoms are actually very typical for mollarets. It's just an ongoing meningitis that has constant symptoms then flare ups that usually end up with a trip to the hospital. 

I have kept my symptoms at bay for a couple of years. So I try and share what's working for me. Because the people suffering from hsv2mm are in excruciating pain so much of their lives, not able to function.

And when you have a diagnosis like this and looking for others and support, and see other people who claim to have rare symptoms getting told off or harassed, it's very intimidating. Made me not want to share my story and experiences for a while. I remember reading through the forums thinking, OMG, if I post my story they'll think I'm somebody named Jay, and I'll get harassed. Which is ironic, because in the secret fb mm group, that has actually happened to two different girls who have mm who tried to come in here and search for others with mm. 

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7 minutes ago, Unrequited said:

I am sorry for the awful experience you have been through. Whilst Meningitis can be associated with HSV and Mollerets specifically. These symptoms and outcomes are so rare and Meningitis is not a HSV infection. It is attributable to multiple virus. Meningitis is a freak outcome which is very very very uncommon.

99.9% of people do not experience this and should realize this is not the general reality of having HSV.

But yes, you should disclose.

Very, very rare, but it is a hsv infection. Hsv2 that invades and infects the meninges. It is very rare for any virus or bacteria to infect the the meninges, but not impossible. Just like it is very rare for Hsv1 to cause encephalitis, but Hsv1 can break the (bbb) blood brain barrier and cause encephalitis. 

These conditions are very very extremely rare, but it is the actual virus itself. 

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I think it is important not to smack anyone around for having HSV 1 or 2!!! Not that anyone is doing that.  80% of people don't even know they have it. I agree with disclosing even mild strains.

In my case only, I just am sad that my partner/husband got it and I am glad that I don't know who it is. I really have no right to judge any illness that is this common and I loved all of my significant others.

 

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13 minutes ago, Quest said:

I think it is important not to smack anyone around for having HSV 1 or 2!!! Not that anyone is doing that.  80% of people don't even know they have it. I agree with disclosing even mild strains.

In my case only, I just am sad that my partner/husband got it and I am glad that I don't know who it is. I really have no right to judge any illness that is this common and I loved all of my significant others.

We are all victims and the people before us are victims too. Venting is good, and I am sorry some of you got a bad strain. (((tight hugs))) Rich, Mackie  and others got one of the worst strains and that is why we need to push to get the virus disabled permanently. 

Not trying to insult anyone, just trying to get the point across to disclose

I think of myself as a success story, with what I've been dealt and with disclosure!! 

Thanks,

It's been a really long hard road. 

Edited original post, although I didn't have one specific post on mind when venting, just common questions and phrases I see over and over again. Not picking on one person or one post.

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15 minutes ago, Feeling Normal Again said:

Not trying to insult anyone, just trying to get the point across to disclose

I think of myself as a success story, with what I've been dealt and with disclosure!! 

Thanks,

It's been a really long hard road. 

Edited original post, although I didn't have one specific post on mind when venting, just common questions and phrases I see over and over again. Not picking on one person or one post.

I'm really glad you are doing well and have come out of the other side stronger. A friend of mine got meningitis when he was a little boy and it left him death, so I know it is not a nice thing to happen to someone.

Glad you found someone who is wise and brave enough to want to be with you regardless.

 

 

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1 minute ago, Unrequited said:

I'm really glad you are doing well and have come out of the other side stronger. A friend of mine got meningitis when he was a little boy and it left him death, so I know it is not a nice thing to happen to someone.

Glad you found someone who is wise and brave enough to want to be with you regardless.

 

 

Thank you! 

That's heart breaking to hear. I hate reading the parents stories on the meningitis support groups, because although what I found that really seems to work for me and some other adults who've tried it, it is not recommended for children or infants, and the parents are left so helpless. 

 

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Just now, Feeling Normal Again said:

Thank you! 

That's heart breaking to hear. I hate reading the parents stories on the meningitis support groups, because although what I found that really seems to work for me and some other adults who've tried it, it is not recommended for children or infants, and the parents are left so helpless. 

 

Just for clarity, that's deaf not death. Big difference.

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2 minutes ago, Unrequited said:

Just for clarity, that's deaf not death. Big difference.

Oh, okay, not as bad a death, but still rough!!! ;)

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no worries. Which other viruses do you have if I may ask? And I am glad you have found what keeps you healthy. You are one of the people I look up to.

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None. I was healthy, in the best shape of my life when I was diagnosed. They've tested for everything under the sun a few times over. Only Hsv2.

 

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23 minutes ago, Quest said:

no worries. Which other viruses do you have if I may ask? And I am glad you have found what keeps you healthy. You are one of the people I look up to.

Forgot to hit the quote button. 

Thank you, 

I've been poked and prodded, spinal taps, ct, full body MRI. Nothing but hsv2.

Before this, I was in school for bs in nursing. I had already changed my mind and wanting to switch to medical technology, then try to proceed from there into microbiology or pathology (favorite subjects). Also studied nutrition and was a health NUT!

I was so healthy. No gmos, organic diet, was preparing a nutrition food blog with my own recipes. (I went to culinary school ages ago). Daily: either swam laps for an hour, jogged 1-2 miles, ab workouts, calisthenics, or dance workouts. Sorry, still just seriously stumps me?!?! 

 

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3 hours ago, Feeling Normal Again said:

Very, very rare, but it is a hsv infection. Hsv2 that invades and infects the meninges. It is very rare for any virus or bacteria to infect the the meninges, but not impossible. Just like it is very rare for Hsv1 to cause encephalitis, but Hsv1 can break the (bbb) blood brain barrier and cause encephalitis. 

These conditions are very very extremely rare, but it is the actual virus itself. 

Well there is the dillemma though. HSV1 can cause a more dangerous kind of brain infection, encephalitis like you say and still oral HSV1 is perhaps the least serious virus that I know of to be honest. Meniningitis with HSV2 seems much more common than HSV1 though although the encephalitis is not.

Statistics and propability is very important. Lets put it this way, 3 unlikely things need to happen here...

1. The condom protection / whatever other procaution will fail to function and infect the partner either way.

2. The partner will get obvious and quite bad symptoms after being infected.

3. The partner will then develope rare symptoms that leads to a brain infection.

So should people destroy their life happines in the only life they are given by identifying themselves as HSV carriers because something super unlikely might happen if they don´t?

In your situation you had a man chasing after you who didnt care about what you had. Not everyone get that lucky. Also as I´ve pointed out before, it´s a bit more brutal with disclose for guys because almost always in the relationship world guys are the ones who chase and take iniative. I mean even as a healthy guy it can sometimes be a bit of a mess, while for a girl it would work with going to a bar and just ask say "Hi I´m Amy, you look attractive, I know this sounds weird but it would be awesome if you went home with me tonight."

If you think I´m bullshitting about this, I could refer you to several social experiments proving this. Sorry I´m not saying that you shouldn´t disclose but I´m saying that both options suck really hard you just have to personally choose which one you think sucks a bit less, even if it´s at the risk of someone else. However, the morally correct choice would of course be to disclose because then you obviously only potientially make your own life extremly depressing and not someone elses. On the other hand, if you feel obligated to disclose all the time and keep getting rejected for this you may have a close to 90% chance of not getting happy again while if you choose the latter option you do put the risk on someone else but if you are careful that risk is very low.

In my case, I would have appreciated it very much if my giver just had been more careful, I totally get that she didn´t tell me however since we didn´t know eachother very well yet and it was of course her biggest secret.

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1 hour ago, Divon said:

Well there is the dillemma though. HSV1 can cause a more dangerous kind of brain infection, encephalitis like you say and still oral HSV1 is perhaps the least serious virus that I know of to be honest. Meniningitis with HSV2 seems much more common than HSV1 though although the encephalitis is not.

Statistics and propability is very important. Lets put it this way, 3 unlikely things need to happen here...

1. The condom protection / whatever other procaution will fail to function and infect the partner either way.

2. The partner will get obvious and quite bad symptoms after being infected.

3. The partner will then develope rare symptoms that leads to a brain infection.

So should people destroy their life happines in the only life they are given by identifying themselves as HSV carriers because something super unlikely might happen if they don´t?

In your situation you had a man chasing after you who didnt care about what you had. Not everyone get that lucky. Also as I´ve pointed out before, it´s a bit more brutal with disclose for guys because almost always in the relationship world guys are the ones who chase and take iniative. I mean even as a healthy guy it can sometimes be a bit of a mess, while for a girl it would work with going to a bar and just ask say "Hi I´m Amy, you look attractive, I know this sounds weird but it would be awesome if you went home with me tonight."

If you think I´m bullshitting about this, I could refer you to several social experiments proving this. Sorry I´m not saying that you shouldn´t disclose but I´m saying that both options suck really hard you just have to personally choose which one you think sucks a bit less, even if it´s at the risk of someone else. However, the morally correct choice would of course be to disclose because then you obviously only potientially make your own life extremly depressing and not someone elses. On the other hand, if you feel obligated to disclose all the time and keep getting rejected for this you may have a close to 90% chance of not getting happy again while if you choose the latter option you do put the risk on someone else but if you are careful that risk is very low.

In my case, I would have appreciated it very much if my giver just had been more careful, I totally get that she didn´t tell me however since we didn´t know eachother very well yet and it was of course her biggest secret.

I understand the social benefits of being female in the dating world. On date sites, I could get 100-200 messages a day and free meals everyday for months, where guys I actually met there said they get 3-4 messages a month, not including prostitution ads.  

But with what I'm experiencing, I was prepared to live the rest of my life alone, and I was okay with that. The guy who gave this to me didn't have this mess, he had one outbreak at the end of our two yr relationship. But even if the chances are 2 in every 100,000 that could end up with what meningitis, I would disclose. I honestly wish it was against the law to knowingly infect someone with an incurable disease without their consent. 

Sorry, I rank someone else's health over getting laid.

My sex life, which vaginal sex doesn't happen often, because when it does, it's a ridiculous circus of paranoid rituals, I make him wear medical grade nitrile gloves to touch me, condoms, plastic wraps, and medical grade sanitizers used, it's not sexy. I am lucky I found a guy who is very patient and knows that the extremes we go through are because I want to protect him from catching this crap.

You can debate and argue till the end of time, after being crippled for over a year while praying for death, with my daughter crying and freaking out because my head would swell up, and I could do nothing but writhe around in pain screaming in agony. I don't understand how anyone could keep something that could cause this no matter how slim the odds. 

So, we can agree to disagree...

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Well your view on this virus is obviously extreme due to what you have experienced with it. It might be the case that there actually are different stains of the virus though and that you may have caught some pretty bad mutation and that therefore it is more likely that if you infected someone else they would get really bad issues aswell. However, as you say your giver only had 1 outbreak.

If we were to take meningitis paranoia as the norm with HSV, that would mean that almost noone would be allowed to give anyone else a kiss aswell. "Before we kiss let me inform you that I have gotten a couple of cold sores on my mouth in my life, this means I carry HSV1 which in very very rare cases can lead to a serious brain infection." I can see that this does not sound so extreme to you to say since you have been through this and all. And about wishing for death every day, I think that for men it is very common to wish for that from just having something that prevents them from having sex. At least when they are single, isolated and alone.

I think very often when people use phrases like "Someones health is more important than getting laid / 5 minutes of pleasure." they very much underestimate what they are talking about. The phrase doesn´t make much sense in my head because it sounds like it describes one small encouter when it in reality is talking about a whole life of loneliness and rejection. This might sound weird to some but the difference of going through a long period of having sex 2 times per year to a long period of 0 times per year can actually be massive.

I think disclose in relationships but no need to disclose for protected ONS when the virus is not active is the only good approach to it. Otherwise you only punish people severly for knowing about their status while the other 85% of the carriers continue as normal without taking any procautions at all. That just scares people away from getting tested.

We could take this theory crafting further... "Before we have sex I have to inform you that I have only been tested for this and this and I have had over 50 sexual partners."

We have to take probabilities into account, I´m sorry but we just can´t afford to see it from the worst possible scenario. We have to look at it from what the odds of transmission are and how 90% of the infected people react to it. And with HSV we also have to take into account how damn common it is for someone to carry either HSV1 or HSV2 and that most people don´t even know they have it.

Last of all one might ask, if your ex had disclosed to you but did so in the normal manner where he explains that it´s really not a big deal blabla and then you ended up getting these severe symptoms, wouldn´t you feel like he betrayed you by playing it down as a skin condition or whatever?

How exactly do you want one to disclose? "I have this thing its not a big deal for me but I have seen a very few people on the internet who say they had some extremly serious symptoms from it, like wish every day that you died bad."

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11 hours ago, Divon said:

Well your view on this virus is obviously extreme due to what you have experienced with it. It might be the case that there actually are different stains of the virus though and that you may have caught some pretty bad mutation and that therefore it is more likely that if you infected someone else they would get really bad issues aswell. However, as you say your giver only had 1 outbreak.

If we were to take meningitis paranoia as the norm with HSV, that would mean that almost noone would be allowed to give anyone else a kiss aswell. "Before we kiss let me inform you that I have gotten a couple of cold sores on my mouth in my life, this means I carry HSV1 which in very very rare cases can lead to a serious brain infection." I can see that this does not sound so extreme to you to say since you have been through this and all. And about wishing for death every day, I think that for men it is very common to wish for that from just having something that prevents them from having sex. At least when they are single, isolated and alone.

I think very often when people use phrases like "Someones health is more important than getting laid / 5 minutes of pleasure." they very much underestimate what they are talking about. The phrase doesn´t make much sense in my head because it sounds like it describes one small encouter when it in reality is talking about a whole life of loneliness and rejection. This might sound weird to some but the difference of going through a long period of having sex 2 times per year to a long period of 0 times per year can actually be massive.

I think disclose in relationships but no need to disclose for protected ONS when the virus is not active is the only good approach to it. Otherwise you only punish people severly for knowing about their status while the other 85% of the carriers continue as normal without taking any procautions at all. That just scares people away from getting tested.

We could take this theory crafting further... "Before we have sex I have to inform you that I have only been tested for this and this and I have had over 50 sexual partners."

We have to take probabilities into account, I´m sorry but we just can´t afford to see it from the worst possible scenario. We have to look at it from what the odds of transmission are and how 90% of the infected people react to it. And with HSV we also have to take into account how damn common it is for someone to carry either HSV1 or HSV2 and that most people don´t even know they have it.

Last of all one might ask, if your ex had disclosed to you but did so in the normal manner where he explains that it´s really not a big deal blabla and then you ended up getting these severe symptoms, wouldn´t you feel like he betrayed you by playing it down as a skin condition or whatever?

How exactly do you want one to disclose? "I have this thing its not a big deal for me but I have seen a very few people on the internet who say they had some extremly serious symptoms from it, like wish every day that you died bad."

Better worded, agreed. If a person casually hooks up or ONS you know there's risks. 

My issue was more of the lying, because I asked him specifically if he was std free, he went and had std panel done, showed me the negative results. I didn't know at that time hsv wasn't included in standard std panels (he obviously did). 

And if he'd told me upfront, I honestly wouldn't have dated him. It ended bad though for both.

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On a lighter note, I was talking to my boyfriend about the discussions here. He said if I'd waited until after we'd started dating to tell him, he would've walked. 

And he said his first thought when he saw me bringing out medical nitrile gloves, antiseptics, etc. was "Doctor is in the house!" LOL!!

Needless to say, he is a nerd! ;)

 

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