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ChiGal

How long until you felt okay?

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Official hello, friends!

I have been around and reading for a while and really appreciate all your posts and support for each other. I thought I was doing alright/improving but I think I could use a little advice/support so here is my first post. I’ll try to keep it short. 

 

I am 39 and have been with my husband for 16 years. Late last year I saw three tiny bumps unlike anything I’d seen before. I went to the doctor and she suspected GHSV1 which was confirmed by culture and blood test (on my birthday, ugh). I spoke to him that night and he was very cool about the whole thing; we didn’t accuse each other of cheating, I explained he probably has had it forever without symptoms and that is that. But then my blood work came back that it was an old infection, he got tested, and shocker - he tested negative! So it seems I have had this for at least 16 years, with no symptoms ever until last year. We talked and he was thrown for a bit as he assumed he had it and not having it made him nervous about me cheating (I have never) but he says he doesn’t really worry that I did/have. I offered to go on meds but he said that as far as he is concerned nothing is different. We’ve been having sex for 16 years and he hasn’t gotten it so we don’t really need to change anything. So he is amazing and that has been wonderful. I also got the courage to tell a friend and she said, “I’m going to stop you right there, because I have herpes too!” So, I told two other friends and they have been so supportive as well.  I am grateful and acknowledge how lucky I am in that. But one of those friends is currently battling breast cancer for the second time and the other friend is struggling to have a child so my struggle seams (and is) so petty compared to their struggles so I don’t want to burden them.

 

Since last fall I’ve been going to therapy and meditating and it was helping. But I have had two or three outbreaks since and they destroy me. 

 

I always loved sex. No self consciousness. All of that is gone. I feel like I have a poisoned vulva and I hate it. 

 

I’m worried all the time about things I know aren’t true - like I didn’t go in the pool because there were three pregnant women in it and even though I know that isn’t how it works I didn’t want to risk their babies. Or like infecting my daughter if she lays in my bed on my sheets. I know these are irrational, but I can’t stop. 

 

I simultaneously know that it isn’t a big deal because I never noticed for 16+ years so how big a deal can it be, but also feel like shit. 

 

I can’t stop worrying about passing it to my husband even though the risk is low and as proof of that he hasn’t gotten it in 16 years! 

 

I think about it every day, multiple times and I thought I was done crying, but I’m not. I have never noticed every twitch and itch and discomfort on my vulva as much as I do all day every day. 

 

You guys! I have things to do! I can’t be sitting here contemplating my vulva all damn day! I need to get over this, like, now!!

 

I’m not sure what else to do. I can rationally accept all the facts and risks and stats in my head, but then the emotion and irrationality and fear/worry/anxiety/and self loathing just washes it all away and I am stuck in this anxious, sad place. 

 

How long did it take for you to not think about it every day?

 

Any other suggestions for ways to reframe my thinking? What am I not doing?

 

Or does it just take time?

 

Thank you!!

 

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Hey! I totally get where you are coming from , I think I have hsv 2 and have constant daily prodrome symptoms which makes me self loathe and feel dirty . I know the feeling you describe of feeling sortof poisoned. The things that help me are remembering the loving husband I have , and everything I am fortunate for . Also remembering that people are going through so much worse in the world. As terrible as it is sometimes I will even watch depressing videos about people that have it way worse to remember how good I have it. I know that doesn't really help sometimes , but once in a while it does . Also , as awful as this sounds , you are luckier to have hsv1 instead of hsv2 genitally , as it is much milder on average . It is actually very strange that your husband tested negative for hsv1 since like 80 to 90 percent of people have it . Over time , I think your body will get a good hold on this and you will have even fewer symptoms . A lot of what I have read from doctors quite knowledgeable in herpes, is that disclosing g hsv1 to a new partner if they have ever had a cold sore isn't even that nessesary because the chance of reinfecting them genitally is so low . (I know you are married so this doesn't matter but just saying) . You cannot infect your daughter or anyone else in those ways so stop worrying about that ! Remember the type that you have is the type that 80 percent of people have and you have nothing to be ashamed of , we are all human and anyone can get herpes . You could have oral one time and still be a virgin and get hsv1. I recommend doing some cognitive behaviour therapy online to help you think more positively . Sending love , hope this helps ! 

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I have struggled with this, too. I have GHSV-1, too, and despite knowing (and repeating over and over to myself) that it's pretty minor, I get obsessed with it and let it ruin my fun. While I technically have had this for at least three years, I spent about two years with an initial misdiagnosis of it as HSV-2, so I've experienced the ups and downs of that, too. After I learned it was really hsv-1 I didn't actually feel much relief, there is something about the idea of being contagious that is incredibly unsettling. But there are moments in which I find peace with the situation and right now I am working on figuring out how I am going to move forward with this situation with more grace and certainty for myself.

I think the first thing to do is accept and honor where you are at in this moment. Right now you are adjusting to something new in your life, and you have to experience all the overblown fears before you can move beyond them. When you are afraid to get in the pool and it feels "real" to worry about it, allow yourself a few seconds to listen to what that fear really is about, listen to the fearful self for just a moment to get to the heart of it. Then sit on the edge of the pool and put your feet in and kick and splash a little bit, enjoy the water and look at the pregnant ladies and smile at them and at yourself, because your overblown fears are just your incredible caring nature in disguise. Give yourself some credit. You care so much that you over-compensate in the form of fear. I do this, too.

Start to ask yourself "what's it going to take to be satisfied that I'm not a walking infection?" Only you can really find the answer to that question. Maybe it's doing more research. Maybe it's filling a journal with facts and figures about transmission, or affirmations that this virus doesn't define you and it's not such a terrible thing (think of how many others have it, too!) Maybe when you are going into a meditation you can use a mantra that opens yourself up to hearing the truths that reside within you: that you are pure, that you are love, and that you are absolutely okay.

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Hello!

 I have GHSV-1. I was diagnosed back in July of 2015 and honestly it took me almost two years to be "okay". There are still occasions, like if I have an outbreak, that I am not not okay. When I was first diagnosed it I had been in a committed relationship for over year so not as long but like you neither of us suspected cheating. My situation was a little different in that my SO did not know he has Asymptomatic HSV-1. For a long time I was terrified with thoughts like yours. My mom has leukemia and lymphoma so I was afraid to touch her for fear of making her sick even though I knew that is not how it worked. I even would carry disinfectant to wipe down the toilet if i was at her house and knew i might use it... It was just this thing in my head where I felt like a walking infection.. I did not want to be touched and was so stressed about how my SO must think I am gross or a walking infection etc. He was super supportive and never had anything negative to say.  

I would have to agree with others. Listen to your fear to find out what it is really about. what is causing all these thoughts like the root of the problem. For me it was the unknown. I started looking up information and finding answers. Its actually how I found this community. Once I learned the information it put a lot of my fears to rest. Another thing that helped was having people to confide in. I told my mom and sister. They had questions but were fully supportive. I had to find what could help me ease my mind so I could work on myself. Once I knew facts and also understood that no my family and SO were not scared me (the walking infection i thought I was). I started working on self-love. I needed to get out of that mind set. For me i knew i needed to take control know my GHSV-1, I've learned a lot about my triggers and prodromes, how to prevent outbreaks and has successfully started not thinking about it. I got to a point I never thought I would. One were at times I even forget I have it. You can get there to where it is not in your thoughts on a daily basis and you go spans of time without it being a thought. You just need to find what will help you through it, like for me it was taking control and knowing how my body and the virus interacted.

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I feel the same way!

It’s really hard. Some days I’m fine physically and mentally, and other days I’m not. I’m a go-getter as it is but sometimes I feel like I am pushing so much more to be successful because I’m trying to over-compensate for this thing that makes me feel damaged. I think I’m somewhat pretty, unique, educated, hardworking, kind, and I want to remember these things more than I do. I feel like I don’t want to be touched sometimes by my awesome, understanding spouse and I hate that for him because it’s really really not his fault. I just feel “turned off” more than on. 

Other than the occasional symptoms, way worse when I’m stressed, I really think that if this disease wasn’t stigmatized I wouldn’t feel so bad about myself!

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I’ll add more as I feel like my post portrayed only the negative side of my feelings!!

I was diagnosed about 2.5 years ago and sometime the first year or so, I began not thinking about it as much. It gets better with time really. I still have down moments, as posted above, but I also realize that people have terminal illnesses, have accidents that leave them physically incompatible with daily life, etc etc.

I’ve also realized that when you get down to it, it really is a virus affecting the nervous system, that flares up in mucous membranes, which happens to be the genitals. How’s it’s transmitted takes center stage. I really try to count my blessings every day and I have a man that loves me for me, is patient when I have OBs, and I have friends that have been supportive, etc. While I don’t feel lucky to have this, I’ve always been a fighter and a go-getter, and it almost gives me an edge. I’ve felt empowered disclosing in the past and educating those that are ignorant, as once was I.

Some days are rough; some moments my brain plays tricks on me, but it doesn’t define me!!

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Thank you all so much! It is so reassuring to hear from people who have felt the same way and understand and are dealing with it well. I appreciate you!

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