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    • Just a human being
      People say they want a cure but some days I wonder. If you express how stressful it’s been to support a small cohort through treatment with limited evidence most do not understand, when you ask for support or your struggles to cope with people’s trauma in treatment, or the ingrained societal perceptions, when you try to talk about the evidence it’s like you’ve done some evil thing! Apparently going against the grain to do what’s right is not worthy of human understanding or support! Expressing human vulnerability also appears to be incredibly evil! Damn! Any weakness or difficulties damn your just not worthy of care, support or respect!  After over a year in the space it’s so clear to me why there has been no progress. You are completely ostracized from the community for speaking out on this topic. How many are voiceless here too scared to speak? Yet we rarely hear from you. When you are successful you just disappear (Of course because we don’t hear from you you don’t exist! You must be a “conspiracy theory”. And even if you did then you would just be anecdotal and oh yeah that publishing evidence when they attempt to discredit it... hmm be interesting to hear the “conspiracy” stories on that one...)and I understand why as no one would listen to you anyhow! I hope for anyone reading this you get out alive lest you become a lost soul in purgatory stamping out hope for others due to confusion weaved in science and medicine.   
    • MikeHerp
      Not directly on HSV, but this general overview of where gene editing is, is a very good read. Recommend at least skimming it. A lot of excitement is building around gene editing.  https://67c5cfaa-bdc0-42a5-95c4-a822adc972c7.filesusr.com/ugd/80a6fd_a53ed12021a54292bb50ed1255e31118.pdf
    • Just a human being
      It s not really possible to ban anyone from this forum. Some people would just get back on and create a reign of terror in their wrath. I’ve seen it before. In the end everyone has to accept them and it teaches the group tolerance. Trust me I’ve been through the same feelings and I don’t want to act like I’m always Mr positive or anything cos I am Just a human being!And honestly we need to consider others welfare. They would be lost without this forum. I think if you took it away they would suffer serious trauma. It just takes a small amount of time to work around it! I have deep respect for @MikeHerp it takes a lot of work to get something like this off the ground! I think genetic research is very valuable and important!  I have duel interests human systems and health and agriculture. In the agriculture realm I’m not a big fan of say Monsanto’s brand of genetic research in application. I am a big fan of genetic research to inform plant breeding!  I think this is good work that will be insightful for humans in the future! Don’t take a few difficult people to heart! Trust me I do know it’s difficult.  I didn’t even read a single comment of theirs! Wow that’s big for me! Back to Fred Hutch....    
    • MikeHerp
      What I find interesting about this trial is that even though half life is 25 days, measurements of shedding and lesions will be done until nearly 4 months.  Maybe they expect the effect to last longer than the half life (maybe the binding effect survives longer than the half life). 
    • MikeHerp
      Message from FHC philanthropy:   “There is a small glitch with the website that we are working on. The page is still live, located here: http://engage.fredhutch.org/site/TR/PersonalFundraisingPages/General?px=1802786&pg=personal&fr_id=1574 I will need to request a new link to "fredhutch.org/hsv" for you on Monday, which is not working right now, but you can access the site from the link above in the meantime. I will let you know when that is fixed”
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RayLynne

New! 21 y/o diagnosed at 18

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RayLynne

Hi everyone! Im new to online forums in general. I was diagnosed almost 3 years ago, my freshman year of college, after being sexually assaulted by someone I considered and friend. Previously before that, I had been saving myself for marriage. It took me a long time to accept what had happen to me. I was in so much denial that I had been raped that I even went back to that guy to tell him that he had given me herpes 2 and to tell him that it was okay. I am very open with the fact that I have herpes because i want to help the stigma around it even if I am just educating the people around me. i wanted to join bc obviously i still have some days where I feel worthless and hopeless and bc I want to help every person I can deal with this better than I did. 

Edited by RayLynne

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Aalia

I am so sorry that you were raped ,and the emotions that comes with this we always need someone to talk to 

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fixme1

sorry to hear, everyone here is here to support you on your days you feel abit put down. welcome to honeycomb!

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Lisajd

I'm glad to see that whilst you went through such a horrible time that you are doing something about breaking down the stigma and educating people your age that is a great thing good for you

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~1234~

I think you're really amazing for being open, I hope I can be that brave some day or be cured lol kinda prefer the latter but honestly not only what happened to you and to be so positive you are truly special. I hope this forum helps! 

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Nightmare7575
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How do people respond when you tell them ?  It great you are so open,There is a story on the net from a woman who just tells everybody  whenever she has a chance and is just our to everybody..

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RayLynne
6 hours ago, Nightmare7575 said:

How do people respond when you tell them ?  It great you are so open,There is a story on the net from a woman who just tells everybody  whenever she has a chance and is just our to everybody..

Well at first I only told my friends and family and they were more focused on the fact that i was sexually assaulted and less on the fact that I had gotten HSV2. They cared more about how I felt about it than the stigma around it. It also helped that I researched it a ton before telling them so i could answer any questions they had. Telling my BF when when we first started talking was really hard for me. I was afraid he would judge me and not want me in his life but he surprised me by asking me out on another date after he had time to research it. We have been together for over two years now and he is still HSV2 negative. As far as telling other people it started in a class in college. Everyone was making herpes jokes and all I could think about was how misinformed they were. I'm kind of hot headed so I couldn't help but speak out and educate them about how what they thought about herpes isn't true. They surprised me as well! Everyone was way more curious than disgusted like I thought they would be. They politely asked questions and we spend the class hour talking about the truth vs the stigma. Non of them ever acted like they were afraid to touch me or tried to keep their distance like I was terrified they would. Obviously there is a time and a place to tell people. For example I don't tell people at work because I am a cosmetologist and the stigma around it could ruin my career but many people who do know still go to me for services because they are well educated now.

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Nightmare7575
  1. Thanks for sharing. You are a very strong person. 

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