My story - trying so hard to stay positive about this, needing support

[lovinglife]

I know there are a million posts on here about this, but even if I don't get any comments, it helps to feel like I can get my story "out there" in some way. It makes it feel like a tiny bit less of a big, shameful secret.

 

I am still not 100% sure yet if I got herpes from my current partner or if I had it before, but odds are it's from my current partner. I feel so stupid and ashamed because I feel like it is my fault that I got it even though I thought I was being responsible.

 

We were getting to know each other for a long time before getting intimate and I knew he was fully committed to me. When we finally decided to have sex we used a condom. After having protected sex a couple times, we both agreed we preferred sex without condoms, so I asked him to get tested. I hadn't been with anyone sexually for a while and had been tested so I was sure I was good. He had no issue getting tested even though he said he knew he didn't have anything and never had in the past, and that he would never compromise my health. I trusted him because of the relationship we had developed at that point, the kind of person he was, and the fact that we had very open and honest discussions about sex and our sexual relationships in the past. I also knew he had been in a few long-term relationships before me, so I figured if he had something, someone would have gotten a symptom or a positive test at some point. When he got his tests done, everything came back negative. Of course, as in most cases, herpes was not included in that test and I didn't think to ask him to get that. To be honest, I wasn't even sure if I had it or not, but I think I preferred denial than to put myself at risk of knowing I had it and therefore having to take responsibility for it. I had had an outbreak of some sort years before, but it didn't look like any herpes pictures I could find (the thing is though, I couldn't find pictures of anything else that looked exactly like it either or that matched the symptoms exactly). I was out of the country at the time and couldn't get to a doctor. Months later I got tested and it came back negative, so I was hugely relieved, but later found out that false negatives are common. I have always gotten cold sores so I feel like I should have at least gotten a positive HSV-1 result, but honestly I don't even know if they tested for both strains. Anyway, I preferred to remain in denial and use my negative test as an excuse to not have to disclose, especially since I never had another outbreak and since it didn't look like herpes either. I also talked to a doctor about the outbreak I had had, and she said that it might have been herpes but that it wasn't a big deal and I didn't need to tell my partners (wondering now why the hell she would say that, although it made me feel better at the time). I think the fact that I thought I might already have it also made me less concerned about my partner potentially having it, which was really stupid because instead it should have made me more aware and cautious. I figured if I did have it, I wasn't having symptoms anyway, so it wasn't a big deal. Again, I guess I was in denial and preferred not to deal with reality because it was too hard to face the possibility of having it and then having to tell people.

 

Fast forward to last month, about 6 months into my relationship with my current partner, and I got an outbreak that was undeniably herpes. The doctor confirmed through a visual exam, but didn't offer me a swab and I didn't think to ask for one because I didn't know that I should. This outbreak looked totally different from the one I'd had years before and I had no symptoms afterwards, whereas now after my outbreak is healed I am still experiencing itching and tingling, making me think that the first one was not herpes. I guess I can't ever know with 100% certainty, but the point is that now I definitely have it.

 

I now feel deeply ashamed, angry, devastated, dirty, unlovable and unfuckable, and there are days when I literally can't concentrate on anything else because all I can do is obsess about this (like today - I still haven't gotten out of bed because all I can do is google herpes in the nonstop hope that at some point this horrible feeling will go away, even though it doesn't). It's really affecting my life and preventing me from dealing with other things that need to be taken care of in my life and from enjoying the things I normally enjoy. I keep trying to make myself feel better by reading articles and posts and watching videos from people saying it's not a big deal and life will be fine. I have moments of hope when I feel like I can actually believe that, but then the grief and devastation return. I even find myself losing my appetite and not being able to eat because of the level of anxiety and pain that I am feeling. I haven't actually contemplated suicide because I don't want to die, but the thought of wanting to die rather than live with this definitely crosses my mind. It’s ironic because the past year has been the healthiest year of my life - I’m eating a healthier diet than ever, my body is fitter than ever, and I have been feeling more attractive than ever. Now I feel like scum.

 

One of the hardest parts is feeling like I could have prevented it. I know that so many people get it even if they use a condom, or get it from oral sex (which is very likely how I got it, but I can't know for sure, especially not until my partner and I get tested). Which makes me feel slightly better. But still, knowing that there was a chance of preventing it by being safer makes it so hard not to be angry at myself and blame myself for getting this. I feel like I should have known better and like I am a failure of a human being. I'm 31 so I'm not some dumb teenager. But it's also so frustrating because I feel like compared to a lot of millennials who sleep around so much, I haven't had that many partners and all except two have been monogamous relationships. I've only ever had one one-night stand and it was protected. It feels so unfair, even though I know that line of thinking is pointless.

 

At the same time, I feel so incredibly angry and betrayed by our education and health care system for not informing us better or encouraging people to get tested. Honestly, before getting herpes I was so ignorant about STDs. Now that it's too late and I already have one that is incurable, now I finally feel like I am truly informed because of all of my own research. But it's appalling that I was going around thinking a bunch of false ideas and information and that most people are going around still doing the same as well. For example, I thought that if my partner had an STD, it would pretty much immediately be transferred upon first sexual contact, so if I ever had unprotected sex with someone and it was monogamous, there wasn't much point in protecting myself from then on. One time I was even basically date-raped by a guy - I woke up with him inside me without a condom on, which I never would have consented to since we weren't in a committed relationship and hadn't been tested, but since I thought that if he had something it was already too late, I continued having sex with him without a condom (lots of other issues to unpack there as to why I continued with the encounter, but that's a story for another time). With what I know now I have to wonder at what an idiot I was, but at the time I really didn't know. I also thought it was totally normal to not use condoms with your long-term partner, especially after getting tested (and the guys I've been with always acted like this was normal as well), but now I realize I should have always been using them no matter what. Again, too late.

 

(Continued below)

 

[lovinglife]

The other terrible part is, of course, feeling like you are no longer worthy, no longer "clean," no longer attractive or desirable. Every time I see a cute guy, especially if I catch him checking me out, in my head I'm like yeah dude, believe me, you don't want me. Every time I see a cute girl I think, SHE probably doesn't have herpes. So I feel like everyone else is better than me and I'm just this pariah walking around with a secret scarlet letter and that if people knew, they would think I was stupid and disgusting and pitiable. I also feel like everyone else is smarter than me and having safer sex even though I know that most people are probably not getting herpes tests or having protected sex all the time. I still feel like somehow other people have it figured out and I'm the only idiot that didn't. I haven't been able to tell anyone yet other than my current partner. Part of me wants to scream it from the rooftops so I don't have to carry around the burden of this huge secret, but I worry that if I tell people, even if they are supportive, all they will see is a person with herpes, rather than just a person. I'm more worried about that than about judgment, really. The stigma surrounding this virus is awful. To be honest, the stigma is so ingrained in me that even the idea of having a relationship with another herpes+ person freaks me out a little. How terrible is that? How can I expect someone to want to be with me, if I am already infected and don't even want to be with another positive person? At the same time, it's hard to imagine being with someone who is herpes-, even if they are cool with it, because I don't want to feel like a walking contagion who could end up infecting them.

 

The last horrible part is wondering what my symptoms will be like for the rest of my life. If I don't have recurrent outbreaks or symptoms I feel like eventually I will learn to live with it. Or so I hope. But I keep reading horror stories of people on here with horrible symptoms, frequent, painful outbreaks, "prodrome" symptoms that never go away, painful sex, etc. I can't imagine having to deal with that for the rest of my life, on top of the psychological aspect. I'm already worried because even though my outbreak has healed, like I said above I am still experiencing itching/tingling two weeks later. I'm so scared it won't go away and I'll never feel normal "down there" again.

 

The only positive thing is that my partner has been super kind and supportive, and told me that any man worthy of me would not reject me for my infection. I told him about my past outbreak and negative test result, and that it didn't look like herpes, but that I couldn't know for sure what it was. He didn't get upset about that. We figured out that he used to get cold sores on his mouth that that maybe I got it from him from oral sex, but obviously it's also possible he has it genitally and just never showed symptoms. I believe him when he says he's never gotten genital symptoms. It wouldn't change the fact that I have it now anyway. We're both going to get tested and we'll see what we find out. He still wants to have sex now that the infection is cleared up but I'm too freaked out right now, especially before we both get tested for everything again, including herpes. I hate to think that I may not ever be able to fully enjoy sex ever again.

 

Would super appreciate any words of encouragement. Even from faceless strangers on a message board it helps.

 

Thanks.

[happyman_adventurous]

Hi @lovinglife,

 

I can feel you are a very smart, organized and cute girl, and I know you will 100% destroy (atomic bomb-style) all those negative thoughts that chase you (which are very logical, by the way).

 

You say this:

 

"At the same time, I feel so incredibly angry and betrayed by our education and health care system for not informing us better or encouraging people to get tested."

 

This is true. Doctors don't seem to be educated enough, they even tell people it's not a big deal (when the initial soul-searching it IS a big deal), and teachers are even less inclined to learn and teach about it, so in general the idea of having an herpes+ population isn't a big concern for any of them. Once again, this opens up some speculation, and conspiracy theories arise: Big Pharma may like herpes+ people because this is easy money for them, so, why bother preventing?

 

You also said something cool here:

 

"To be honest, the stigma is so ingrained in me that even the idea of having a relationship with another herpes+ person freaks me out a little."

 

But if you have a relationship with an herpes+ person, he won't be 100% of the time outbreaking. If he takes care of himself (healthy lifestyle, suppressive therapy) the herpes recurrences will be very, very anecdotical, and most of the time he will be normal and sexy.

 

The same goes for you. If you take care of yourself, everything will be 99% normal again. It's a process of acceptance, like a shed skin process: you transfer your old self to your new situation. It is perfectly doable after some time and reflection, and you can be 100% happy after you complete this journey, even if you have this annoying skin condition for life. You keep being a cool, wonderful person with plenty of powers to be happy anyways.

 

Most of the time you will keep it at bay, and it won't interfere a bit in your life.

 

If I had to have a relationship with an herpes+ girl (and statistically I probably know some in my entourage that are carriers), I wouldn't mind for a minute about her herpes - I would wonder instead about her personality, her sex-appeal, her feminity, her values - nothing of this is touched in any way by any herpes even when she's having an outbreak - unless, precisely, she gets drown by all the self-inflicted fears and negative thoughts that exists primary in her head, because she will become an evasive and/or depressed person, and THEN there is a problem.

 

So, how to avoid the negativity? That is the real question now. The illness brings to the table all those fears, this is part of it, and they are founded in our own good will towards other people, and desire to please, which are good, wonderful things that we have to keep, adapting them to our new situation.

 

We have to understand that we aren't really touched in our essence by this virus. We are "we" despite this virus. It is an annoying complement in us. People get the flu all the time: they are contagious, they feel miserable, but the flu doesn't change them, right?

 

For girls there's an additional annoyance, because you usually have more pain than us guys, and it takes longer to heal if it's internal. Honestly, I would concern more about that than about my supposed "dirtiness".

 

My soul is so clean than I marvel with myself. My body is so good looking even if it hosts that little fucker. I am so powerful and I know it. Do I have an intermittent skin condition? Yes. But I do love myself exactly the same.

 

I know I'm lovable like any of us, I'm bright as any of us can be, I'm funny, and a person who can make any woman very happy, WITH this virus inside of me.

 

If you keep this in your mind, like a long-term mindset / goal / commitement to yourself, you will destroy all your fears, and herpes will be a very minor thing in your life, for a fact.

 

Best of the best to you,

 

 

 

[Lifegoesonn]

That was a great comment happyman adventurous needed to read that today, and your story is so similar to mine I felt the same way !!

[lovinglife]

Thanks @happyman_adventurous! I really appreciate you taking the time to read and respond to my story, and for your encouragement. I hope one day I can change my own perception and feel the same way you do. It will be a process. I'm still struggling a lot right now but people like you help a lot. Also, you are totally right about negative thoughts interfering more in a relationship than the virus itself - that is exactly what's happening with my current partner (whom I might have gotten it from, but we can't be sure). He is not bothered at all by the virus but my depression is affecting both of us. I'm trying hard to get better.

 

Again, thanks for the comment. Best to you.

[depressedhippo]

@lovinglife I'm 23 and was just diagnosed with HSV-1 one week before my birthday. It's now been a total of 3 weeks since my symptoms started and I am confident I know which partner gave it to me. Unfortunately, I started having sex with a new partner just around the time the symptoms started (I thought it was a yeast infection) so it's very likely that I've already infected someone else. I feel like absolute shit. I can relate to your story and all the emotions your experiencing about yourself and about this new truth. I spent the first two weeks in my bed: depressed, crying nonstop, not eating.

 

The partner who gave it to me has oral herpes and did not tell me before our sexual encounter. I asked if he had been tested for STDs and he said yes that they were negative. At the time, I had no idea doctors and clinics did not test for herpes except for by request. I always assumed that because it was an STD, it was included in the panel. But nope. He says that he did not know he still had herpes and that he could pass it to partners. I say bullshit, because even I know that and I didn't have sex ed in school. But I really am disappointed in America's sex ed programs (more like lack thereof) and just general ignorance everyone has about sex. I feel just as stupid as you do and I feel that it is unfair. I've had less than 20 partners (a small number compared to A LOT of people I know my age) and I have always used a condom. I'm scared that no one will ever want to give me oral again because that's where my breakouts are and it can spread to their mouth or genitals. I talked to my most recent partner about my symptoms and later my diagnoses. He has been really understanding and does not hold anything against me. But he has also seen how devastated I am.

 

I feel like I'm never going to be able to have children or a natural, vaginal birth. I'm concerned about having a breakout on my cervix since I have an IUD, increased risk of breast cancer, recurrent outbreaks that will affect my life in the extreme, etc. For example, during my first outbreak I was in so much pain I could not sit down or wear underwear. I was also on my period and I broke out in four different spots. My hope for the future is really really slim and I have been contemplating suicide. It felt like my life was over before it even started. And damn. 2010-present has not been good to me. It's literally been one thing after another with very little positive in-between.

 

The only thing that has helped me get up this past week and start getting back to my life, is the fact that I do have dreams. And I'm not going to let some fucking stupid dickwad take that away from me. He gave me this disease and it sucks. But I'm not going to let him or my rapist or any other guy who has treated me as less than human because of sex fuck that up for me. I'm a bad ass. I'm a strong person. We, women, share the most difficult struggles and worst cards this life can deal to anyone and we should be proud of our resilience. Never ever let another person control your future or define your value.

 

Personally, I will always disclose my herpes to potential partners. Because I didn't have a choice when I agreed to have sexual intercourse with the guy who gave it to me and everyone should be able to decide if that want to take that risk.

 

You seem like a truly levelheaded person. And I don't really think you believe that you are a pariah or scum. You've been working on yourself, becoming the healthiest you, you can possibly be. You felt good about yourself and you see the results. Hold on to that, your hard work won't just disappear unless you stop taking care of yourself. You can still be sexy, attractive, intelligent, funny and clever with herpes. If it's HSV-1, I've heard that breakouts are far and few between and that eventually the outbreaks will lessen over time anyway. Don't do suppressive therapy until you have learned what triggers your outbreaks. If you are still itchy and tingling, give your doctor a call to ask if that is normal. I've seen several posts about that, so it seems like it might be common. I've still be a little itchy lately, too. Whenever you're unsure, just take extra special care of yourself. Take an epsom salt bath to prevent or lessen the symptoms of a breakout. Get plenty of rest. Take vitamin C and vitamin D daily. Keep eating healthy and working out. Your body will fight this for you if you just take care of it. And unfortunately that does take time that not a lot of us has. This is our new reality. We have to accept it or we cannot move forward. Thankfully, it is not the end of the world and we CAN make an effort to help educate people and eliminate the stigma. Stop researching online, step back and do something you enjoy. Watch something that will make you laugh. Focus on this present moment. It is a gift and we can never get it back. Stay strong, friend. We're here and listening.

[lovinglife]

@depressedhippo Thanks for the response, I'm so sorry to hear you've been struggling a lot like me. I also spent a week barely getting out of bed and barely eating. I lost I don't know how many pounds in a short amount of time, and it's funny because people are complimenting me on how I look. If only they knew why.

 

I'm especially sorry to hear you've gotten to the point of contemplating suicide. As I mentioned in my post, it has been on my mind as well, though I have not gotten to the point of seriously taking it into consideration at this point. If you do get to that point, I hope you reach out for help before making any decisions. To be honest I actually called a suicide hotline last week. Not because I was on the verge of killing myself but because I was desperate and didn't want to get to that point. It actually helped. Also, something I heard once about suicide that helped me is that it's always going to be an option. You can always turn to it later. But maybe try getting through just one more week, one more day, or one more minute before you choose it. Another thing I heard that struck me is that suicide is like taking your own pain, multiplying it by 10, and spreading it to all the people around you. All it does is bring even more pain into the world. This diagnosis, although it feels devastating, is not worth losing our precious lives over.

 

I have actually been with fewer than 10 partners and I am 31. So I really haven't been with many. I did not always use condoms, as mentioned, but I thought since I was in long-term relationships it was fine, which was not very smart. To be honest I also let myself be pressured by some guys, and was forced by two others. This is something else that's never talked about - the number of guys walking around there sleeping around with tons of girls and never using protection, pressuring girls into sleeping with them or into not using condoms. I think men have a huge responsibility to play in all this, and unfortunately we women are the ones left more susceptible to infection as well as heartbreak. I'm so sorry to hear as well that you were raped. I know how incredibly violating and traumatizing it can be on so many levels. Unfortunately it is more common than many think. Sending you love. <3

 

By the way, you will absolutely be able to have children and in fact most women with herpes are able to have a vaginal birth (if not, it's not the end of the world - many, many children are born by C-section, including myself, and turn out just fine!). Go watch the interview with Dr. Sheila Loanzon by Dr. Kelly Schuh. Both have herpes - Dr. Loanzon is an OB-GYN and talks about how like 99% of the herpes+ women she's delivered have been vaginal.

 

This is our new reality. We have to accept it or we cannot move forward. Thankfully, it is not the end of the world and we CAN make an effort to help educate people and eliminate the stigma. Stop researching online, step back and do something you enjoy. Watch something that will make you laugh. Focus on this present moment. It is a gift and we can never get it back. Stay strong, friend. We're here and listening.

 

Thank you, and right back at you! Life is never going to be perfect and everyone has some cross to bear. This diagnosis just goes to show that you never really know what's going on with someone, no matter how normal or happy they might look on the outside. We can't always control what happens to us, but we can control how we react and respond to it. We have a choice to let this ruin our lives or to let it propel us to be even better, stronger, wiser people. Easier said than done, but it is possible and others have done it.

 

Sending you all the love and good vibes. We'll get through it together!

 

[Doglover]

Powerful posts. Thank you all for sharing.

[Girlneedinghelp]

On 6/5/2018 at 7:47 PM, lovinglife said:

The other terrible part is, of course, feeling like you are no longer worthy, no longer "clean," no longer attractive or desirable. Every time I see a cute guy, especially if I catch him checking me out, in my head I'm like yeah dude, believe me, you don't want me. Every time I see a cute girl I think, SHE probably doesn't have herpes. So I feel like everyone else is better than me and I'm just this pariah walking around with a secret scarlet letter and that if people knew, they would think I was stupid and disgusting and pitiable. I also feel like everyone else is smarter than me and having safer sex even though I know that most people are probably not getting herpes tests or having protected sex all the time. I still feel like somehow other people have it figured out and I'm the only idiot that didn't. I haven't been able to tell anyone yet other than my current partner. Part of me wants to scream it from the rooftops so I don't have to carry around the burden of this huge secret, but I worry that if I tell people, even if they are supportive, all they will see is a person with herpes, rather than just a person. I'm more worried about that than about judgment, really. The stigma surrounding this virus is awful. To be honest, the stigma is so ingrained in me that even the idea of having a relationship with another herpes+ person freaks me out a little. How terrible is that? How can I expect someone to want to be with me, if I am already infected and don't even want to be with another positive person? At the same time, it's hard to imagine being with someone who is herpes-, even if they are cool with it, because I don't want to feel like a walking contagion who could end up infecting them.

 

The last horrible part is wondering what my symptoms will be like for the rest of my life. If I don't have recurrent outbreaks or symptoms I feel like eventually I will learn to live with it. Or so I hope. But I keep reading horror stories of people on here with horrible symptoms, frequent, painful outbreaks, "prodrome" symptoms that never go away, painful sex, etc. I can't imagine having to deal with that for the rest of my life, on top of the psychological aspect. I'm already worried because even though my outbreak has healed, like I said above I am still experiencing itching/tingling two weeks later. I'm so scared it won't go away and I'll never feel normal "down there" again.

 

The only positive thing is that my partner has been super kind and supportive, and told me that any man worthy of me would not reject me for my infection. I told him about my past outbreak and negative test result, and that it didn't look like herpes, but that I couldn't know for sure what it was. He didn't get upset about that. We figured out that he used to get cold sores on his mouth that that maybe I got it from him from oral sex, but obviously it's also possible he has it genitally and just never showed symptoms. I believe him when he says he's never gotten genital symptoms. It wouldn't change the fact that I have it now anyway. We're both going to get tested and we'll see what we find out. He still wants to have sex now that the infection is cleared up but I'm too freaked out right now, especially before we both get tested for everything again, including herpes. I hate to think that I may not ever be able to fully enjoy sex ever again.

 

Would super appreciate any words of encouragement. Even from faceless strangers on a message board it helps.

 

Thanks.

I really related to everything you just said, have you overcome those feelings yet? The scarlet letter and that you were the only person that messed up? I feel it too