Re-Branding Herpes

Was thnking about the struggle against stigma.. It's interesting that oral herpes gets a pass on the stigma because it's called something different, cold sores. Because of marketing, herpes became stigmatized. Maybe we can use marketing to lessen the stigma.

Maybe there needs to be a new name for genital herpes. There is already so much stigma attached to the name herpes, that maybe, like a sinking ship, it should be abandoned for something new.

I don't see this as a white washing, but more of a correction. To come up with a name that is burdened by the stigma and reflects the reality of what is like to have the condition, especially considering that most of the people who have it don't even get symptoms.

Also the name herpes sounds like some plural version of a bug called herpe. So it has a bad connotation like you got an infestation herpes- like insects in your genitalia.

Here are some names that came to mind:

Tingles

Cold sores (expand this so it covers both genital and oral types)

GH (genital herpes)

Hows about just educating people - which has been sorely lacking in the medical community. Most stigma comes from ignorance. That, and silence. Look at HIV. When it first came out people were convinced you could get it from a toilet seat and only gays got it. With education and discussion HIV, while still commanding plenty of fear, that fear is FAR more realistic. IE: most get that you can get HIV from ANYONE (ie, male/female, gay/straight, old/young, whatever.) but you won't get it from a toilet seat.

Sadly STD education in this country is PATHETIC. Both in High Schools and in general. And the CDC isn't helping by recommending that H not be tested for and then Dr's just not mentioning that you aren't getting tested. We need to hold them to a better standard....and it's something I plan to address hopefully once I get my father moved in with me later this year.

Sure, "rebranding" might work - but I'd put my money on education and dialog for getting the best results.... I'd rather dig out the cancer than put a band-aid over something.....

@hippyherpy I would be more in favor of "HSV" which would be similar to how HPV and HIV are now referenced.

I'm old enough to remember when most people did not differentiate between HIV and AIDS, they just said AIDS, even though HIV does not always progress to AIDS. Likewise, I recall HPV being most commonly referred to as "genital warts" even though only some strains of HPV cause genital warts and even those strains don't always cause warts. Now, it is commonly referred to as HPV.

I think it is similar for HSV in that HSV sometimes causes oral sores (which people then tend to call it cold sores) and sometimes causes genital sores (which people then call genital herpes sores) but sometimes HSV causes neither of these symptoms.

Just my opinion.

I agree about HSV - AND - all these STD's need a LOT more education to be injected to the public sector..... because most people are horrendously ignorant about all of them...

And whose friggin idea was it to have all the main STD's acronyms represented as 3 letters all starting with H and ending in V????? Talk about how to really confuse the guy on the street.... SMDH....

WCSDancer2010 - I agree on the education part. I will admit I was completely ignorant myself until I learned of my own status. I really like the fact sheet on WHO's site: http://www.who.int/mediacentre/factsheets/fs400/en/

I'd prefer HS instead of HSV because too many people confuse HPV HIV and HSV like WCSdancer said.

Herpes Simplex is enough of a descriptor.

Education is key, but the name "herpes" is really a terrible and misleading name. Like I said, it sounds like you've got a plural of herpe, as if each blister is a separate herpe.

They need to come up with a name that better conveys what it is.

Even "cold sores" is a better description than herpes because at least it matches what is observable.

I say if the ship is on fire and sinking, better to get another ship.

Genital Cold Sores is much more accurate. I should at least be allowed to call it that if oral carriers of herpes can call what they have "cold sores"

GCS

This ship isn't sinking though - it just has a few holes in it and a captain (the CDC) who has no idea of the effect that their big-assed anchor is having on the reef, as it were. They don't *see* the damage of their policies (as we do here in the trenches) so they are blissfully ignorant of the damage of their unwillingness to "pull anchor" and fix the leaks.

Cold sores are called that because you often get them with a cold. Genital OB's usually happen with stress. And not everyone gets sores. So saying "Genital Cold Sores" isn't at all accurate. In fact, there's really no way to have a wording that tells you how everyone gets it because there really isn't a true "typical" presentation.

Again, CONVERSATION and EDUCATION is the key. Then the name won't matter. Trying to distract for the issue by trying to find a "nicer" name just feeds into the stigma actually. The best cure for stigma is to open up a dialog. HIV, Gays (and other sexual and relationship preferences), mental illness, etc - all those things have had stigma attached to them which is lessening every day thanks to the brave people who step up and speak out and refuse to hide in shame any more. SHAME feeds stigma more than anything else. And as Brene Brown says about shame:

If you put shame in a petri dish it needs 3 things to grow exponentially - secrecy, silence, and judgement. If you put the same amount of shame into a petri dish and douse it with empathy, it can't survive.

Secrecy

Silence

Judgement

Judgement usually is worse when the first 2 are present.

So if you REALLY want to make a change, stand up and be ok with saying "I have Herpes ... just like most of the population. It's just that *I* know where I have it. Do YOU know where you have it?" Because 80% of people won't be able to give you an answer .... and that right there is the place of power that I feel we need to come from.

You are absolutely right abt the CDC and the medical community. After much discussion w/ my giver and reviewing his health records (he shared them) I learned that he actually requested a full STI panel when we started seeing each other. But his doctor didn't test him for herpes. So, in the bigger scheme of things, I can't really blame my giver. Wrongly implemented sexual health policies brought me here.

You are also right about starting a discussion. When I first diagnosed the biggest challenge for me is to put a face to the disease. I didn't care about the name, we can call it sillypimples or other names (I actually call it herpy). What I needed is to see other people, hear their stories and understand that life goes on, you can do anything you want after diagnosed. I am so greatful to Adrial and WCSDancer. Especially, Adrial's videos helped me a lot. After reading discussions, handouts and watching Adrial's videos I thought to myself "Hey, he has this virus too and he has an awesome life. Everything is going to be okay."

What everybody needs is a healthy discussion and correct information abt herpes. Anything that stops this stupid policy CDC employs and this wrong impression and information surrounding herpes such as people with herpes are sluts or you can catch herpes from a toilet seat (don't get me started abt google images abt herpes). So, like @WCSDancer2010 said we need to stand up, make this a hot issue and give the public correct information then the stigma will fade away because public will see this is not a big deal and there is nothing to be afraid of.

Ask people what pops into their heads when you say the word herpes. Most people imagine oozing sores or really messed up people. You need to change that image not the name. You need to associate the word herpes to the reality - a bunch of red pimples like everyone has in their faces and an ordinary person that continues living his/her life fully.

Ask people what pops into their heads when you say the word herpes. Most people imagine oozing sores or really messed up people. You need to change that image not the name. You need to associate the word herpes to the reality - a bunch of red pimples like everyone has in their faces and an ordinary person that continues living his/her life fully.

BAM!!!

Someone sent me this the other day... it hits the nail on the head!

My husband always called it "my infliction" when he used to bring it up to see if I was outbreak free. I never minded that word. Anything sounds better than "herpies" in my opinion. I have talked him into getting tested. We have gone over 20 years and as far as we know he is H- I just want to be 100% sure and to make sure he isn't one of the asymptomatic carriers. I would love to think he doesn't have it after all these years. He gets jock itch from time to time and I have always wondered if it really was jock itch and not herpies. I guess there is a difference.....no clue what jock itch even looks like

@Katidid - While I know it would be reassuring to learn he is negative, so in that sense I hope for you that he is negative, perhaps you will find a silver lining if you discover he is positive. For instance, if he is positive, it is obviously not disrupting his life and you will no longer need to be concerned about transmitting it to him.

@optimist you are right! I just wonder what test to get since we have never been this route. Is PCR blood work the way to go?

@Katidid - Type specific IgG. Good luck!

Thanks!

I'm writing this down for hubby to take to dr. So, I wrote it as you put it IgG. What does that stand for, do you know? It is a blood test, right?

Yes it's a blood test. Here they order it as HSV 1&2 IgG. I don't know how deep of an explanation you want for what it stands for but basically, they draw your blood into a tube that will allow them to spin it down and separate your blood cells from your serum. There are five classes of immunoglobulins in your serum (which are antibodies). One of those is IgG.

I'm stopping myself before I bore you to death :) lol

Just make sure it's a Type Specific test ... some places like to lump them together which isn't helpful if one partner has HSV1 and the other has HSV2 :p

Ok....thanks. he's going to our GP so I wanted everything specific as I've read all about GP's not really being up to date on hvs testing, etc. I've hand written all this down for him to take with him

That video helped me to get laid recently..

@Hippyherpy are you at all cautious ( I mean I think you said you use condoms), but are you careful about skin to skin or grinding or do you just go at it and hope for the best? I know you get laid about every weekend which is nice as you always disclose so it helps others to see that most people really don't find it a big deal.

Do you mean for me or them? I sometimes think about cuddling issues, but I've read that it's not likely to transmit that way. I could be wrong.

I'm paranoid about catching HIV.

I'm pretty every sexually active person has at least a few strands of HPV.

Other than that stuff, I'm not too concerned about getting STDs anymore because I got herpes. I use condoms a lot more now.

I mean for them. Of course, they might have something as well and just choose not to disclose. I just meant skin to skin in the bits area. Are you at all contious of rubbing skin to skin or you just go with whatever happens.

Yes, HIV is def something we have to worry about. I guess, I would always wear a condom too unless you know for certain the other person was tested like yesterday. It's going to come down to people carrying their last std test results in their wallet....not a bad idea. Of course, then people will capitalize on a way to revise them.

I don't get why HSV1 which is more contagious these days than HSV2 because it can not only infect people's mouths but half new genital herpes cases are HSV1, gets spass but hsv2 doesn't.

HSV2 is more rare than type 1 and pretty much only infects the genitals.

Shouldn't it be the other way around?

@hippyherpy - I don't think HSV1 gets a pass. I think there is a significantly greater stigma attached to GENITAL HERPES whether caused by HSV1 or HSV2. I think oral herpes gets a pass because it is so pervasive, it is not associated with a sex act, and there is no way to maintain the illusion of control if one accepts that oral HSV1 is also capable of causing genital herpes through oral sex, even when symptoms are not present.

As for one being more contagious than the other, there are so many factors to consider. HSV1 spreads more easily to a variety of places but more people have existing immunity to HSV1. Genital HSV2 sheds asymptomatically at almost twice the frequency of oral HSV1, but greater doses of antivirals are required to suppress oral HSV1. And then there are other risk factors like penises (better at transmission) and other variables like whether or not someone is circumcised. At some point, discussing which is the better herpes to have feels like I've entered the story of The Sneetches with the stars on their bellies. But I agree it's frustrating that genital herpes carries a stigma that doesn't apply to oral herpes.

As for the educational part of rebranding herpes, I would like to hear doctors routinely tell patients the following when they request a standard STI panel:

- A standard STI panel does not include tests for HSV or HPV, two of the most common STIs.

- The majority of the population will contract both HSV and HPV at some point in their lives.

- Condoms only provide partial protection from HSV and HPV.

- HSV can be spread from the mouth to the genitals through oral sex, even when symptoms are not present, but the risk is particularly high when an oral sore is present. Transmission works similarly for genital-to-genital contact with risk being exponentially higher when a genital sore is present. Reasonable risk management includes avoiding oral sex when oral sores are present and avoiding genital-to-genital contact when genital sores are present.

- Most people with HSV and HPV are unaware they are infected due to an absence of symptoms or very mild symptoms.

- Contracting HPV and/or HSV should be considered an assumed risk in casual sex situations.