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Hating life with herpes


Fml

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Soo I will preface you by saying my attitude sucks and I am probably going to sound grossly negative from this moment forward.

 

I was diagnosed with herpes 14 months ago. I am engaged to the man who gave it to me and he promises he didn't know he had it. This does not make life simpler. I resent him for his former promiscuity and burdening me with this for the rest of my life and I'd probably leave him if I thought anyone could love me again. He is the only the 4th person I have ever slept with and despite my efforts to mind my health and not give it up to everyone who comes along I still have a dirty disease.

 

Additionally, things have not gotten easier with time. I spend the duration of my outbreaks hiding under the covers and crying until it goes away. Fortunately I am self employed so I can afford to do this, but it has begun to set me back financially because my outbreaks are so frequent. I have tried acyclovir, lysine, I gave up alchohol and sugar and nuts and white carbs, I run 12-15 miles a week. I've lost 20 pounds in an effort to control this disease and it's not making any impact. Im supposedly "healthier" than ever and with no reward. I still have recurrences almost every month and sometimes twice a month. Also I used to only have one blister appear whereas now I have four small ones. And as of recently they've appeared in a slightly different location. This does not make me excited. Why am I not developing any resistance toward this? It seems to worsen with time.

 

Since my diagnosis my sex life has suffered drastically. I don't want to be touched, I feel disgusting and like that region of my body is on a permanent quarantine. I went from making love 3 plus times a day to maybe twice a month. The two times a month aren't even enjoyable as the psychological aspects have triggered something called secondary vaginismus. This is involuntary muscle tightening during intercourse. There are programs to remedy this but I never get a break long enough from outbreaks for it to even begin to have a positive effect.

 

I never talk to anyone about this as I can't. I don't want them to assume the worst of me for having it. I cringe when people crack herpes jokes and loathe the insensitivity of doctors so much I haven't even been back for a woman's wellness exam. It's February and I've already lost 3 weeks of my life this year to this disease. I feel like someone is going to have to check me into a loony bin if this continues. My quality of life is GONE.

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I just want to give you a big hug...I know how it is to feel like this..only I let it go in a couple of months.  I have constant herpes outbreaks too — am menopausal and this triggers outbreaks.  I have looked at it as a spiritual lesson ... I am not religious, I have just faced dying in my life and learned with that that everything is a lesson, everything is an opportunity to grow and feel a deeper connection with yourself and life.  

 

The thing that jumps out at me from your post is anger, resentment and self loathing — my heart goes out to you as these beliefs are what are destroying your enjoyment of life and not the H. Somehow these beliefs and the thoughts they create have to be changed: thoughts create emotions and the only way to change that is to change how you think. Forgiveness, acceptance and loving yourself is needed to heal as well as eating right and exercising. 

If i told you that to reduce your outbreaks dramatically and enjoy life you would have to forgive your giver, would you?  And if you wouldn't, why not? Don't you want to be happy? Forgiving your giver (he may not have known, and his former promiscuity has nothing to do with it — many people have got it with one committed partner). Your resentment is eating away at you and destroying the quality of your life. I also have genital warts from an unfaithful husband, and he also put me in debt. I could be angry and bitter but I choose not to be. I want to be happy because I know how short life can be. But if you want revenge then the best revenge is living well and being happy.  Be an inspiration to others ... and love yourself.  Your attitude doesn't suck and I think we have all been there, and return there sometimes ... it just isn't working for you and you are unhappy. It's all a process and doesn't happen overnight. Try rewriting your post as if you are counselling someone else who you love and who you don't want to see so unhappy ... It is a great exercise and very healing.  <3
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I appreciate your response and I apologize if this is rude, but I don't see a correlation between forgiveness and my immune system suddenly deciding to work.

 

Also I know for a fact my fiancée was incredibly irresponsible and promiscuous and yes I pay the price for his choices. Apparently he had two partners disclose to him after they had dated that they had discovered they had herpes. He of course being a man, assumed he was fine if he had no symptoms and never bothered mentioning that even though I was obviously concerned as I made him get tested before I ever slept with him.

 

So yay for me.

 

Maybe this site isn't for me. I'm a cynical bitter asshole over this because it's ruining my life and I can't see the silver lining at all.

 

I'm very young so maybe that makes me Ill-equipped to deal but it also makes me angrier because I will have had a minuscule amount of time as a healthy human being.

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First off, THANK YOU Fml for being uncensored and authentic with where you are. I'm glad you posted here. Don't apologize for any of it. I am glad that you aren't holding back. I remember that anger. I remember it well. I felt it for YEARS. I remember that F**K IT ALL feeling. (And yes, F**K HAPPY PEOPLE, TOO!) And like lelani said, that anger and "why me" still comes up every once in a while for all of us.

 

I don't think the point here is to fall in love with herpes ... it's not to sing it love songs while you stare lovingly into its cartoonish eyes ... You're missing the point if you think this is really about herpes. It's about your relationship to YOURSELF. It's about the thoughts you think. It's about the beliefs you believe. It's about how you feel about your life. You have herpes. You are not herpes. Herpes isn't your identity. Do you really believe that? Don't make that mistake. I don't know you, but I damn sure know you're more than a virus. Please don't demean yourself like that.

 

The choice here isn't whether or not you have herpes. That's done. Accept that. The choice now becomes this: What are you going to do with it? Are you going to suffer, or are you going to move past it? That is an important choice. And either ways are totally in your power. But that is a choice you have control over. AND what you're going through right now is part of your process. I'm not shaming your process. I'm just wanting you to see that there's another way if you want it.

 

And sure, allow yourself to feel pissed off at the world. Allow yourself to feel angry. Allow yourself to feel sad, to mourn. As long as you aren't shutting down, as long as you're not shutting yourself off to your own real, raw feelings. But beating yourself up sure doen't help ... Calling yourself a cynical bitter asshole doesn't help. Allow all of of your feelings to bubble to the surface while taking care of yourself. And then notice when and if you're ready to stop being angry. It will come with time. Follow your feelings. Follow your natural instincts to heal. My heart goes out to you. Totally. Completely. My gut is in knots writing this. My gut is in knots hoping that you'll get that you're still lovable and worth it. I hope you don't hear all of this as fluffy BS, but as the truth. 

 

“Never apologize for showing feeling. When you do so, you apologize for truth.” — Benjamin Disraeli

Notes:

  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

Helpful resources:

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Fml you aren't being rude at all and I do know how you are feeling, I have been there and not just with H.  I contracted genital warts from my husband being unfaithful to me when I was 23 (I had to be tested for AIDS too as one of the women he was with had been exposed). And around that time I had a baby and was given 6 months to live. I do know what it is like to feel like life is over, to feel dirty and that no one will love you...and that I wasn't even special enough faithful to.  But I lived through all that and learned that I am more than what happens to me and the darkest times have eventually brought the best times.

I have been angry and understand how awful betrayal feels...and being angry doesn't mean you are a bitter asshole, it just means you are grieving.  But as long as you are chronically holding onto that anger it is hard for your body to heal.  The correlation is that if you are angry and unforgiving you create chronic tension and adrenalin in your body - both of which block healing.  I agree with H Opp in that just allow yourself to feel it and don't judge yourself...just know that you do have the power to move on and find love, for yourself and with someone else...there is another way and it is a choice and yes you do have control over it if you want it. 

I am sending you love and good thoughts with all my heart.    

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This dialog is so refreshing!

 

Thank you, fml for all of it: rage, despair, giving up, resenting your giver...I appreciate your being "a cynical bitter asshole." Yay! Me too! ha ha...

 

For years I raged about the injustice of this. I was *not* a promiscuous person! I did not fuck around indiscriminately! How could the shitty world work this way when I hadn't done anything to deserve this? Honestly, I didn't think that people with herpes deserved their diagnosis...I just didn't think about it much. Very unfortunate for them, but that was them and not my problem.

 

In a post a while ago, I advocated this fantastic graphic novel called Monsters by Ken Dahl. (I included an amazon.com link, though maybe your local library carries it, too). On one page, he imagined his own newspaper obituary that read something like this:  LOCAL MAN COMMITS SUICIDE OVER HERPES. The 'sub-headline' was something like: 'World Can't Believe How Shallow He Is."

 

Somehow his imagined newspaper obituary captured all my bitter rage: I'd kill myself over this horrible disease if that weren't so damn pathetic. I pictured people I loved at the funeral gossiping about my death and saying, "Really? Herpes? That's why he did it?" They would shake their heads and say things under their breath like, "Loser" and "Quitter." (Nobody in my real life would ever say that...but this was my pity party and I wrote their scripts.)

 

I knew other people had much worse predicaments in life, but this sucks too. Felt like a death sentence.

 

And hey, I am still on my journey of acceptance, so I won't pretend to be the Big H cheerleader here. But the darkness of those years past and now, looking back, I see that I didn't have to spend YEARS in that dark place. Life chose to give me herpes and I chose my response to it.

 

I'm sorry for your painful outbreaks. I'm sorry you have lost work and suffered sexually and emotionally. I can't take any of that away from you and you know what? I wouldn't if I could. All that misery are logs on the bonfire for creating the life you want and to try to take away your pain would insult the power you have inside you.

 

fml, I wish that when I was raging at the shitty world for doing this to me I had had the guts to come to a website like this and share my pain with others. I didn't. I sulked, cried, and holed up at home overeating and giving up on big parts of life. I honor your courage to speak up.

 

It's the road out of this hell.

 

MplsMan

 

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  • 2 weeks later...

I would just like to say that I appreciate how non judgmental you all are.

 

And to update you I have other events that have come crashing down on me, like this crazy nagging woman who kept insisting this child she has is my fiancee's ---turned out to be not so crazy after all. After not eating or sleeping for days and on the verge of yet another outbreak, I finally went to a Doctor with tears in my eyes and hives on my chest only to discover that I also have a kidney infection.

 

She was the best Doctor I have ever spoken to about all of this. She said she was sad for me that I didn't have this under control and explained things that even my obsessive and extensive research hadn't uncovered. And I now have a prescription for acyclovir and valtrex, lunesta, Xanax and lexapro in addition to antibiotics for my kidneys.

 

I really can't believe that this is where I am at the age of 24. Damaging my body from stress. Unable to cope. Too many prescriptions! And getting the craziest curve balls. I never imagined my life like this and it makes it hard to care about anything. It shows me that no matter what you do or want in life--- you really have ZERO control over anything. That's tough for me. I love control and how it makes me feel and I know it's not even real now.

 

I will tell you also that my stoic fiancée broke down and cried on Valentine's day. He said he loved me so much and I am the reason he's a better person now. He apologized to me and said he hates that all of this is hurting me because he can't take any of it back. I think it just made me feel better to finally hear him say sorry to me.

 

I've also been doing some reading about near death experiences. Everyone leaves their body and they are so happy to! It was nice to have the perspective that our bodies don't matter. It's a shell. That's an adjustment for me as my body is a huge part of my business... But in the grand scheme of things, it means nothing.

 

I'm not out of the woods yet but having some people to vent to is really more amazing than I would have guessed. So thank you.

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Hey girl! Good to have you back. And thank you for your appreciation. I can already feel you softening to be more compassionate to yourself in your process. That feels good to hear … And I'm sorry if it feels like things are piling up on you now. Yet another great reason to take care of yourself and your body (shell or not!). ;) 

Your post also reminds me of something that I try to live as much as possible: Bad shit is always going to happen to us, but it's not what happens to us that defines us; what defines us is how we decide to react to the bad shit. Each moment is a new opportunity. That is our character. (I needed that reminder myself … I fall off the wagon a-plenty, but am determined to keep getting back on that damn rickety-ass thing …) 

I actually heard something just tonight that really rang true to me: Life will always contain pain, which is inevitable, but suffering is optional. Suffering is feeling pain and believing we can't do anything about it — that it will never pass. Be gentle to yourself in the bad times and humble in the good times. You'll make it through this. You have us and it sounds like you have a good fiancé. Take care of yourself, FML. 

Notes:

  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

Helpful resources:

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I want to say...go you!!!!!  Yes you are dealing with some hefty stuff and yes shit happens...and it happens to us all - I had serious shit at the same age that I literally didn't think I would live through.  I agree with Hop (sorry mate...its easy to type :-) ) that its not what happens to us its how we react to that determines how we feel and work through it.  I want to give you another hug...you are on the way and I think you have softened too...maybe it was because you could just spit it out on here and let some of the anger go.  I am glad you did because I can feel that you are working through all this and seeing the lessons.

 

So glad you found a better doctor...the medication will help you over this hump.  And that is all it is, your life is not going to be like this forever and you are already seeing it differently, and that means things will change.  We only see what we believe.  So keep reading and learning about life and yourself...illness kicks us in the ass to do that!  The woods don't sound so dark now and you may get lost a bit again but its all part of it and you will soon be over the worst.  I'll keep a look out for you on here and will never judge you - might challenge you a bit but its only how I have challenged myself to get better and be happy.  Yes look after yourself...rest and eat well...and let your fiance look after you too. x
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"To encounter an undesirable situation and work with it willingly is the mark of a wise and happy person. Imagine getting a flat tire, falling ill at a bad time, or knocking something over and breaking it — and suffering nothing from it. There is nothing to fear if you agree with yourself to deal willingly with adversity whenever it does show up. That is how to make life better. The typical, low-leverage method is to hope that you eventually accumulate power over your circumstances so that you can get what you want more often." Found this on a great blog post.

Notes:

  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

Helpful resources:

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Oh my oh my, my heart is bursting.  Partly out of sadness for the hurdles you are encountering, and then from pride that another H woman has the guts to come out with it.  HECK YES.  There are days I wanna scream.  There are days I want to slash dudes tires who "gave" this to me, ugh! 

Sounds like you are coming into your own, and really working through things.  Since everyone else has said so much of what I would probably say :), I will just add a few things. 
I suffer from anxiety depression as well, always have.  Medication can be a god send!! But I also think it is a great idea to consider talk therapy, took me about 10 years to find a therapist that has been good for me, but it has TRULY helped and I think coupled with meds it is a great combo.  (Not saying its for everyone just an idea!);)
And lastly, keep on being real, you should be so proud of yourself for getting these feelings out of your body and onto the screen, just that is something SO many people (including myself) have trouble taking on.  As long as you continue to put yourself first, I know that you are going to be not just good, but GREAT.  H is a bummer, but it can put a mirror in front of us, and make us realize things about ourselves and our relationships we may have not otherwise!  (Ok one more thing, I know I'm being long winded)  Be patient with yourself sweetie, be kind and gentle with that heart of yours because it deserves it, especially when it is feeling wounded.
YOU ROCK!!!!
Elle
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  • 1 month later...

Wow.i am in tears because of all the positive things you all have had to say ......I just found out this week I have herpes 1&2 and I have no clue on how to handle it but I have been researching it and the immune system thing seems to really work.i pray we all can conquer this horrid thing ....I hope I didn't offend Antony by praying but I am a Christian and my faith is what's keeping me strong right now.

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This is such a great dialogue and I love what everyone is saying. I just want to mention one thing, Fml, in response to when you said that you don't see the correlation between forgiving yourself and your immune system. I'm currently in school studying holistic and alternative medicine and have learned a fair amount about the relationship between psychological and physical health. Some of you may already be aware of this but there is in fact an entire field of study called psychoneuroimmunology. I know, big science word that is hard to pronounce, but forget about what it's called and take note of it's meaning. Scientists have proven that there is a DIRECT LINK between high levels of stress and poor immune functioning. There is no debate over this. It is FACT. I can show you studies if you'd like.

 

Everyone else has done a great job of saying positive, uplifting things, and if you're anything like me, you may not want to hear any more of "forgive yourself", "it will get better", etc. Not that those words are bad and in fact, I'm learning to love them. But in times of self-loathing when it seems like the world is out to get you and may come crashing down at any moment, sometimes it's nice to just hear "you're right, this sucks, I feel disgusting and I hate my life." There's a comfort and a sense of camaraderie in that. I mean, congratu-freaking-lations to you all for moving past your anger and self-loathing but I'm not there yet and frankly I don't think I will ever be. (That's not actually how I feel at this moment but I did for a long time and still have days like that.) It's a struggle but I am slowly moving past these negative feelings about myself. But I digress...

 

I just wanted to mention that psychoneuro-psycho babble stuff so that people were aware of it and able to look into and understand the scientific basis behind the correlation between stress (including anger, sadness, self-loathing, etc.) and our wonderful dis-ease. So, if and when you're up for it, even if it's only one minute a day, try to de-stress however you can. Think happy, loving thoughts. If for no other reason than to enhance your immune system and maybe keep an outbreak at bay for an extra day, week, hour. Who knows, at some point you may even start to believe yourself.

 

Much love to you all.

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i found this to be a very genuine post. I am a very spiritual person and completely agree with everything you have said and feel the same way about it. After being told i had herpes, i also realized my life changed not only based on my emotions. I noticed that i needed to keep my immune system very healthy (i take L-Lysine) and that it is very important to stay healthy. Moreover, i realized that i cannot be around stressful, negative, people. i can no longer have friends who cause drama and make me feel stressed out and angry because they, by doing that, can trigger an outbreak for me! I have felt that i now surround myself with loving people and it keeps those "bad ones" out it is not only for my mental health and because those people suck, but its for my herpes. i love this site because i honestly think it turns a not so good thing into a positive situation, everything happens for a reason and for some reason we, the people on this site got herpes.

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  • 1 month later...

Wow again... I'm extremely grateful for all your feed back. Your perspectives and positivity give me such an insane warmth. I guess the world can't be too awful if complete strangers are willing to comfort you!

 

I actually have NOT been taking meds regularly for surpressive therapy and (knock on wood) this is the longest I have gone without an outbreak in the 17 months since diagnosis. 3 entire months. I can't believe it. I attribute it to the antidepressants and anxiety meds forcing me to calm down when I obviously couldn't figure out how. I guess that proves your point Abby!

 

Which leads me to my next problem... I still have no interest in sex. And unfortunately, my fiancé does... Poor guy. I'm pretty sure I'm turned off and terrified enough by sex to happily never engage in any related activities again. I don't want him to even touch me! How the hell can you go so long condemning and quarantining a region of your body as "off limits" and just plain "bad" before you're stuck feeling that way? I guess the answer is 17 months...

 

On another unrelated note... I'm thinking of making a BIG career change... And guess what it's going to be about? HERPES. Oh yea, I said it. I will inform you all once all the kinks are completely worked out...

 

Until then, I hope you are all safe and happy and healthy. And thanks so much for everything!!

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