Disclosure, education, and breaking the stigma

[ThatGurl]

After recently getting the silent treatment after disclosing to a potential new partner, again, I did a lot of thinking and have come up with an idea to create a way to disclose, educate, and hopefully help break the stigma of ghsv1. I would LOVE some input and suggestions on this project.

This wouldn't necessarily be a way out of the talk, but more of an aid. We forget things or don't have all the information or maybe the person wants more information.  That's what this is for.

I am a web developer. I want to create an engaging and informative site that can be used to help people disclose and/or help inform new partners.  Obviously, this has to be done in a way that is not overwhelming to the user and gives them information from reputable sources.

There's a bonus in doing this. I can track where people are leaving the website, how many pages they view, and other statistics about how people are using it. This would help us gain better insight into how people view this topic as well as how the website performs. And I would be more than happy to share the data excluding any personal data that may be collected.

So, my question is: Do you feel like this would be beneficial to you? Would you use it? And what would you like to see/say about dating and ghsv1?

Any thoughts any suggestions are welcome. Please leave a message even if you think it's a waste or time or stupid. 

Edited June 14, 2018 by ThatGurl
Adding content

[Scooby2112]

Helpful yes.  

Kind of a site designed to direct people too that presents the information in a way of someone recently told you they have gHSV1 what does that mean?

Also, I would have an intro, the overall fact sheet, 

Statistics on shedding, transmission, prevalence of hsv1 (oral and genital) you likely have already been exposed (1 in 2 have hsv1) . If you have oral HSV1 you are unlikely able to catch it again in a new location.  

Possibly some links to some expert answers on different boards.  Maybe the Ted talk from Dawson, the video from Adam ruins everything about herpes.  

Just ways to educate how common and what it entails.  

Then at the end the person who disclosed to you obviously cares about you, and this puts them Ina vulnerable position.  As the stats show the transmission risk is low and you can discuss ways to be initimate and lower your risk further (antivirals suppressively, condoms, oral etc).  

[ThatGurl]

4 minutes ago, Scooby2112 said:

Helpful yes.  

Kind of a site designed to direct people too that presents the information in a way of someone recently told you they have gHSV1 what does that mean?

Also, I would have an intro, the overall fact sheet, 

Statistics on shedding, transmission, prevalence of hsv1 (oral and genital) you likely have already been exposed (1 in 2 have hsv1) . If you have oral HSV1 you are unlikely able to catch it again in a new location.  

Possibly some links to some expert answers on different boards.  Maybe the Ted talk from Dawson, the video from Adam ruins everything about herpes.  

Just ways to educate how common and what it entails.  

Then at the end the person who disclosed to you obviously cares about you, and this puts them Ina vulnerable position.  As the stats show the transmission risk is low and you can discuss ways to be initimate and lower your risk further (antivirals suppressively, condoms, oral etc).  

This is exactly what I want to accomplish! 

I didn't see the TED talks, so I'll have to check them out. Thanks!

[ThatGurl]

43 minutes ago, willian superman said:

 

你好，我来自于中国，我看到你是做互联网技术的。我建议你做一个公益网站，让更多的人知道这个病毒，全世界的人都在感染，让政府积极对待。

 

谢谢您的意见。让这些对许多人来说是一个很好的观点，我会努力做到这一点。

I hope this message reaches you as I needed to use a translator.  Having this accessible for people across cultures and language is a very good point and I will keep that in mind. However, there may be vast differences which would alter the content.  I will look into this more closely as I assemble the information. 

[ThatGurl]

7 hours ago, willian superman said:

中国医生根本不会重视这个病，在中国最好的医院，医生也只是把它当做一般的皮肤病来对待。

如果想要积极的面对，只能让国家知道这个病毒的危害，以及感染群体的庞大，让国家积极出台政策，让风头机构更快的投资。

 

这样我们也许会得救了

医疗行业知道什么和公众做什么之间的差异是惊人的。我不能诚实地说，我甚至知道这一点，仍然觉得我可以学到更多。我学得越多，我越意识到我们都对这个问题无知。

 

我与医生的经历非常相似，因为他们觉得这很常见，并且不会对您的整体健康造成严重伤害，所以这不是什么大问题。不过，我确实知道一些报道过医疗保健人员感到羞愧的人。这真是一种耻辱，因为在我看来，它落在两者之间。不，这并不罕见，但这并不意味着我们不应该采取必要的预防措施，对传输负责并谨慎。

 

我计划包括当前疫苗和研究的信息和链接。

 

It's amazing the difference between what the healthcare industry knows and what the public does. I can't honestly say that I even knew that much and still feel like I could learn more. The more I learn, the more I am realizing how ignorant we all are to this issue.

My experience with my physicians has been very similar in that they feel that is so common and doesn't present a serious harm to your overall health so it's not a big deal. However, I do know of some people who have reported getting shamed for it by persons in healthcare. It's really a shame because, in my opinion, it falls somewhere in between. No, it's not uncommon but that doesn't mean we shouldn't take the necessary precautions and be responsible and careful about transmission.

I do plan on including information and links for current vaccines and studies.

[Unrequited]

On 6/14/2018 at 1:35 PM, ThatGurl said:

After recently getting the silent treatment after disclosing to a potential new partner, again, I did a lot of thinking and have come up with an idea to create a way to disclose, educate, and hopefully help break the stigma of ghsv1. I would LOVE some input and suggestions on this project.

This wouldn't necessarily be a way out of the talk, but more of an aid. We forget things or don't have all the information or maybe the person wants more information.  That's what this is for.

I am a web developer. I want to create an engaging and informative site that can be used to help people disclose and/or help inform new partners.  Obviously, this has to be done in a way that is not overwhelming to the user and gives them information from reputable sources.

There's a bonus in doing this. I can track where people are leaving the website, how many pages they view, and other statistics about how people are using it. This would help us gain better insight into how people view this topic as well as how the website performs. And I would be more than happy to share the data excluding any personal data that may be collected.

So, my question is: Do you feel like this would be beneficial to you? Would you use it? And what would you like to see/say about dating and ghsv1?

Any thoughts any suggestions are welcome. Please leave a message even if you think it's a waste or time or stupid. 

I think this is a great idea.

[Innocent56]

I'd find this really useful as I am recently diagnosed HSV-1 and am dreading telling any future partner.  Having a website to refer to that takes the clinical aspects out and also the scaremongering would be a great resource.  I think that Scooby 2112 has pretty much nailed what I would like to see on the site.  So keep us posted please! 

[Heal World]

We need active self-help. We need to let more organizations know that we are a special group. There are very few research institutions that currently research and develop svs. It is better to be a young man than to waste time. This is not just for ourselves. It is also for our family. We must fight.

[ThatGurl]

On 6/23/2018 at 12:30 PM, Innocent56 said:

I'd find this really useful as I am recently diagnosed HSV-1 and am dreading telling any future partner.  Having a website to refer to that takes the clinical aspects out and also the scaremongering would be a great resource.  I think that Scooby 2112 has pretty much nailed what I would like to see on the site.  So keep us posted please! 

Will do!  I've been doing some research and have found some really solid stuff to work with.  It's really unbelievable the amount of bad information on the internet from "quality" sources.  For example, WebMD says you can get it from sharing your toothbrush .... sure if I scrub it on a sore and stick it directly into your mouth or crotch.  But who would do that?!  There are so many scare tactics that are being used it's insane.

The more you know, the better it is when you have to have the conversation.  Doesn't really make it any easier, but it is better.  Don't be discouraged, what you are facing is a social stigma.  Here's some good info to get you started: GHSV1 shedding rate is 3-5% yearly, transmission rates for women infected with GHSV1 are 4% without any protection (and no active outbreak), 2% with condoms or meds, and 1% with condoms and meds.  Most people with GHSV1 do not take daily medication though so it's not as relevant.  

I would suggest heading over to http://www.ashasexualhealth.org/stdsstis/herpes/ I found a lot of good information here.  

[ThatGurl]

4 hours ago, Heal World said:

We need active self-help. We need to let more organizations know that we are a special group. There are very few research institutions that currently research and develop svs. It is better to be a young man than to waste time. This is not just for ourselves. It is also for our family. We must fight.

I was thinking more of conversing than fighting, lol.  The truth speaks for it'self and if people don't want to hear the truth, that's their prerogative.  But I have yet to find one website that gives specific information on GHSV1 alone and really delivers the information people need to know.  That's the plan.

[Innocent56]

Thanks for your message and the information about shedding which frankly, suggests that condoms are for the peace of mind of the potentially anxious partner rather than anything else....  Thanks also for the link and good luck with the site - I look forward to hearing about it.