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What was your break through?

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Great question! My major breakthrough came when I realized how most of the suffering I was going through was actually self-inflicted. It was one of those moments when time echoes and slows down. Realizing how I was perceiving things wasn’t *actually* objective reality, but subjective. So that was the visceral switch for me that gave me the opening to snap out of the victim role I had carved out for myself and see reality in a new way. It’s all quite deep stuff, you see. ;)

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. 

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For me, it was a series of realizations:

1. That I was still killing it at work and in school,the same way I had been up to the day I had been diagnosed. Call that capable.

2. That I was still able to look forward to my future, knowing that I was just as capable as always. Call that forward-thinking

3. That valacyclovir flys off pharmacy shelves so fast that orders have to be filled right away. Call that not alone.

4. That I could still do good things for good people, and that those close to me still felt the desire to reach out to me when they need a hand. Call that desirable.


When I looked at the weeks to a month of my actions and accomplishments after being diagnosed, I saw that I was capable, forward-thinking, not alone, and desirable. Just like I had always been. RegularGuy was still just a regular guy.

That evidence assures me that herpes holds little power over my day to day, and absolutely will have no effect on what I achieve or how I live in the long run. My dreams haven't changed, and neither has my ability to chase them.

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For me it was education. When I first suspected I had HSV and saw the doctor I was a mess. My biggest source of pain was my children. I felt like I had failed them. I knew nothing but the stigma of herpes. So I read a lot and spent time educating myself. It didn't more than a few weeks to learn two critical pieces of information. 1) that HSV is not a big deal and 2) sex education is seriously lacking.

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I think it was more like a series of breakthroughs. And sometimes it's like several steps forward, a couple steps back, then more steps forward, so I try to be easy on myself. I think my breakthroughs were as follows:


- I found that whenever I mentally substituted the words "cold sores" for herpes, it was easy for me to identify how much of my thoughts were related to the stigma vs. the actual condition. I discovered that virtually all of my distressing thoughts were about the stigma, not the condition itself.


- I spent a lot of time reviewing studies and gaining an understanding of prevalence, transmission risk, etc. This opened my eyes to the fact that 80% of adults are capable of transmitting HSV to an uninfected partner's genitals, yet the vast majority don't expend any energy thinking about this and don't know their own status or the status of their partners. So when someone would say something like "you should use a dating site for people with herpes" I would think "isn't that all dating sites?"


- This is more specific to me personally, but I discovered 50% of women in my specific demographic (age, race, marital status) have HSV2 and most don't know it. I had no idea it was this common, nor did I realize most people are unaware they are infected. I realized that by taking all steps known to reduce transmission risk (disclosing, taking antivirals, using condoms), I pose less risk of transmitting HSV2 than nearly half my peers who are unknowingly infected. This helped me understand I am not a unique risk but actually very ordinary in terms of the risk I present.


- I asked myself if I would do things differently if I could go back to when I first started kissing and having sex. Would I have done partner testing and limited to long-term monogamy with people who tested HSV negative? Or would I have used dental dams to receive oral sex, knowing that most of my partners likely had oral HSV1? If testing was the norm and everyone knew their status, would I have avoided the roughly 80% of past partners with HSV? My honest answer is that I would have done almost nothing differently. Maybe in rare cases in which I was very much already on the fence and ended up regretting the encounter anyway, it could have been a factor in falling onto the other side of the fence instead of proceeding. But those instances in my life were rare. In all other cases, I would've enthusiastically done exactly what I did and taken those risks I didn't even realize I was taking at the time. This reflection on my own choices helped me understand that it's okay to allow other people to manage their own risk. I would not have wanted 80% of my past partners to opt out in order to protect me from HSV. Why should I make that choice for someone else?


- I had a great disclosure experience. The guy was totally accepting, said he had oral HSV1 so he understood how HSV works in general and wasn't afraid. We quickly moved on from that discussion and it was clear he was still very attracted to me. Getting physical with him felt euphoric, not hesitant or clinical. Even though we didn't see each other for long, his reaction gave me some forward momentum and proved to me that sex did not have to feel any different and HSV2 did not have to be a big deal in a physical relationship. It also made me realize I did not have to settle for clinical and hesitant sex, so when disclosing to prospective partners, I don't just feel like I'm awaiting acceptance or rejection, I'm also gauging whether their mindset will allow for mutually satisfying sex. If not, I swiftly move on.



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Mine was also a series of breakthroughs. First was EMDR from a therapist and seeing connections between how I felt about my diagnosis and how I felt about some childhood sexual abuse I had experienced. Second was education and recognizing that not only was it extremely common, but plenty of people still go on to have relationships. Third—and probably the biggest—was a small group shame resilience course I took and realizing that *everyone* feels shame about *something*. Finally, even in the two years since my diagnosis, I continue to have shit thrown my way. It’s like the universe knows I need continual reinforcement of the fact that shit will always happen, and how I respond to said shit is sometimes the only thing I truly have control over.

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  • 3 weeks later...

Love this thread... 2 months after being diagnosed with high risk HPV and precancerous cells on cervix and HSV2 I found out I have a rare liver disease that has no cure. The bitch is that HSV2 and steroids and immunosuppressants don't get along and can cause nasty complications down the road as my disease progresses. But the Up Side is that I am beginning to realize that "shit happens" and only I can decide how I'm to deal with it even when it's 100% out of my control.


I have 4 incurable diseases and all interact in the worst of ways - This was not how I saw my 2018 starting - however, life and time don't stop and I don't plan to either. For me it is a fight and struggle and I look forward to greater Peace like many of you have begun to or have found.

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