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One Year Later

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Last week I had the one year anniversary of my diagnosis. When I first found these forums, I really enjoyed hearing from people who had known about their status for a while, so I've decided to share what the past year has been like for me. Sorry it's so long....I guess a part of me feels like I just need to tell the story.


The Diagnosis


About a year after splitting with my ex-husband, I had unexpectedly started a long-distance relationship and decided to ask for an STD panel along with my Pap smear. I had no concerns whatsoever since I wasn't aware of any symptoms of anything, believed my ex to be faithful, and had been tested before getting married. Life was good and I felt on top of the world. I was 42.


I started to cry when the nurse practitioner told me I had HSV1 and HSV2. I was still crying when I had to call my brand new boss of two months and explain I couldn't come back to work because I had some bad news at the doctor's office. I spent the afternoon bawling my eyes out, curled in the fetal position on the floor of the kitchen. And again the next day when I had to take a personal day from work.


The Fallout


I cried for months. At home, at work, in the car, at the store, while hugging my dog. For seven months, herpes was the first thing I thought of when I woke up in the morning, and the last thing I thought about before going to bed. And most moments inbetween! My friends kept asking what was wrong. My boss kept asking if everything was okay. I couldn't tell anyone and the isolation of it all was excruciating. The relationship with Mr. Long-Distance fizzled. I felt unworthy even just talking to total strangers. I wanted to be dead. I researched how to commit suicide. The only thing that kept me alive was knowing that I couldn't abandon my 14 year-old golden retriever. Never mind my mother or my eight siblings. It was my sickly dog who depended on me and had no one else to care for him.


I had a low IgG index value, so I retested with the western blot. When that came back positive, I chose to tell my ex by e-mail. I braced myself for his response, which was, "Great. Shit." Miraculously, he tested negative for both HSV1 and HSV2. Sixteeen years of no condoms or antivirals and he doesn't get it. I'm still in shock. And a little pissed. I don't know who I got it from, nor has it ever really mattered. I'd almost rather not know. It just meant that I know now I've had HSV for about 18-25 years and had no idea.


Since I was stuck--didn't want to abandon my dog and didn't see any hope for the future--I did all the reading I could about herpes, and passed the time with exercise, journaling and reading self-help books, but totally closed myself off to human connection. When I finally got the courage to tell a friend, she reacted with shock and tried to make me feel better with a round of "at least you don't have......".


The Turning Point


At seven months post-diagnosis, I broke down and went back to my $170/hour post-divorce therapist, even though my dog's medical expenses were eating me alive. She asked if she could give me EMDR therapy. I had just read the Humans of New York's series on veterans and PTSD at the time, so I knew what EMDR was, but didn't think it would be applicable to me. But I was miserable, so I agreed. After just one session, I came back the following week and said, "I actually felt quite a bit better this past week, even though absolutely nothing has changed and I still have herpes. Is that normal?" She smiled and said she was very skeptical herself, but once she saw how much it helped her clients, she felt like she was doing them a disservice if she didn't offer it.


As a result of that session, I immediately started making connections to how my herpes diagnosis had a lot of really surprising similarities to a brief period of sexual abuse I experienced when I was seven. (In terms of how I felt about both experiences and how I viewed them through the lens of my very religious upbringing.) I realized how profoundly my early childhood beliefs about perfection and judgment influenced me without even being aware of it. I had two more sessions of just talking and processing what had come out of the first session, then ran out of things to say. It was the weirdest thing. It was like a drain had been unclogged, mentally and emotionally.


The Healing Journey


I'm not even sure how to describe the past five months except to say I've never experienced such an intense period of personal growth. I started to to consider that I just might be okay. I participated in several of the support group phone calls that Adrial posted. To anyone else who was on the line--thank you. I underestimated how much just hearing the voice of another person "like me" would help me to realize I'm truly not alone. I had a huge realization that I had unknowingly been very dependent upon other people for validation, and when those sources of validation dried up (divorce, former wonderful boss who moved away, Mr. Long-Distance), I had nothing to draw from within myself. I'm changing that.


I've started to take much better care of myself--eating better, lots of exercise, more sleep, meditating, exploring my interests, and making sure I'm taking the time to "fill my tank". I am paying close attention to my body and what outbreaks look like for me (mild enough I attributed them to other things). I'm making connections with others and re-entering the social world of humans a top priority.


Six weeks ago I started attending a ten-week workshop about shame resilience created by social worker, professor and shame researcher Brene Brown. I had read several of her books over the past year, and I couldn't believe my luck in finding a workshop about shame. It's been kind of like a small class and group therapy all in one. It's been WONDERFUL. By week two, I thought to myself, "Wait a minute. If *everyone* feels shame about *something*, then WHY THE F*%@& am I walking around with my head hanging low and my tail between my legs??" So I'm changing that too, and I've felt profoundly different as a result.


The Future


I am so hopeful for my future. I feel like a new woman, really. I feel better about myself now--even with the knowledge that I have herpes--than I have at any other time in my life. I haven't re-entered the dating world. I'm actually really enjoying being single right now and figuring out the things I wish I had known before I got married at 26. When I do decide to date, I will know my value and hold my head high. For that alone, I am grateful for herpes. No person, no experience, no diagnosis will ever take that away from me again.


To everyone who is suffocating from the grief, shock, anger, isolation, and shame: you are not alone and you are not broken. {hugs}

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@HikingGirl Thank you so much for sharing your story! I relate to much of what you said and hearing about your growth is very inspiring.


Is there a particular Brene Brown book you'd recommend? I just purchased some Pema Chondron books that may keep me busy for a bit, but I'd love to hear of any particular books you found inspiring. I particularly liked "Training In Compassion" by Norman Fischer.

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@optimist I love them all, but the book I'm reading as part of the workshop, "I Thought it Was Just Me (But it Isn't)" is especially applicable to the shame most of us have felt with the stigma of herpes. I listened to it on Audible last summer while on an airplane ride, and reading the paperback now in the context of the workshop, it feels like entirely new material. It's very helpful to put words to shame and to see it from a different perspective. We're just now digging into the four areas of developing shame resilience and I'm really curious to learn more.


I will definitely check out "Training in Compassion." I love to read. Maybe we need to start a book thread! And I love Pema Chodron. "When Things Fall Apart: Heart Advice for Difficult Times" sits on my night stand and I've referred to it countless times over the past year, along with "The Untethered Soul" by Michael A. Singer.

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Hi @HikingGirl I am so new to this, recently Went to my Gyno for what I thought was a cut but turns out herpes... I couldn't wait for my blood test which I go tomorrow so I went to a urgent clinic and they proscribed me medication for herpes by loooking at it... I am taking acyclovir 800 4X day 5-7 days just started today and get my blood results tomorrow! I currently am going threw the flu like symptoms and down below I have read and research so much but it just feels better to talk to someone who's been threw simply what I'm going threw, if you don't mind being a friend and sharing anything with me to resurre me I'm going to be okay and that it's common and just be someone to talk to I would appreciate it ! Thank you !

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Hi @EnilyLove00. I think it's great that you've reached out on the forums already. The one thing I wished I had when I was first diagnosed was to be connected with other HSV+ people. The isolation I felt was really, really painful! Some people might sail through an HSV diagnosis, but I think many of us really need time and permission to experience some or all of the five stages of grief. So whatever you're feeling right now (like uncertainty and fear) is really normal. The physical symptoms will eventually calm down and go away. Only time will tell how frequent or severe future outbreaks are. Just take it one day at a time and remember to enjoy all of the good things in life, because they don't last forever. Likewise, the bad stuff (like how you view herpes or the physical symptoms) ) won't last herpewon't last forever either. This is not the end of your life, so to speak--it's just a hiccup. You're always welcome to PM me if you need someone to listen!

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  • 6 months later...

I'm happy to hear it helped you, @WideAwaeke17. Just last Thursday when I was at the gym, I thought yet again of how I never would have survived the past 18 months without exercise.


Even today, while I doubt I'll ever be thrilled about having herpes, I can't deny that it's one of the best things that has ever happened to me. I desperately needed to learn what it has taught me, and if I had a choice, I'd never go back to the person I was before my diagnosis. {{hugs}}

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I have, but they're mild enough that I didn't know what they were for a very long time. I definitely experienced a lot of itching over the years, which I thought was just due to yeast infections. (Now that I've been on acyclovir about 7 months and the itching it nearly gone, I'm realizing it's likely related to HSV.) I can also remember a few times I had redness in one area in the inner fold of my labia that was tender to the touch and stung when the water from the shower hit it. I'd look and look and look and all I'd see is the tiniest bit of redness which I attributed to sex or who knows what. I only remember a couple of those, but I think it's because I had more and I just didn't really notice them amidst discomfort from yeast infections or itching. Once I was diagnosed, and was really watching and paying attention and knew about prodrome symptoms, I realized I was getting super mild outbreaks most months. Last fall (after stopping Valtrex and before starting acyclovir) I actually found one raised bump. It was the first one I've ever noticed.

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  • 4 months later...

This post just spoke to my entire core, I’m overcome with emotion. I hope to one day get to this point of clarity or some sort of “OK”. I feel like I’m not experiencing this because I had my first outbreak after being with my boyfrkend for the first time. We found out about my diagnosis on the same day... while I’m trying to make sure he’s OK, I’m trying to be OK as well.


I love Brene, I read a couple of her books before this and feel motivated to read them again now that these issues are bigger than the ones that drew me to her books in the first place. Thank you for sharing your thoughts through the different phases you experienced. I’m on day 4 of being officially diagnosed and this story along with the entire community has been life changing! I hope to attend the group call one day that you spoke about if it’s still offered.

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  • 2 weeks later...

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