Jokes and Stereotypes

[Trixie8]

Hi Guys! Glad to be in the community. I am in search of ways to bring this discussion and disease in to the main stream. I was diagnosed a few years ago and have been through and felt everything you all have felt. I am now working towards changing the stigma through Hollywood. We all know jokes about herpes can be hurtful and confusing but I find that when my personal friend group makes jokes to me, with me, knowing about my diagnosis I feel very different. As I work towards finding ways to speak and write about herpes. I am looking for jokes, comments, and stereotypes that you all have experienced or come up with as you go through your journey. What is harmful, and what can make you giggle. What is assumed about you, and what you assume about others. Or any other insights you have that you think are important for the general public to know. I have my experience and perspective, but look forward to hearing yours.

[RegularGuy]

There is a TV show (on Hulu I think), called Futureman. The main antagonist is a man who is trying to cure herpes. He repeats a line throughout the series that actually had me laughing, despite the fact that the character's delivery was very sad;

"They call it herpes simplex virus, but there is nothing simple about it".

 

When I heard that line, I was hanging out with some co-workers who don't know about my diagnosis. I managed to maintain composure and not laugh too hard at it, but I did laugh. It was mostly the vulnerability and sadness of his delivery that made it funny, because it was a very genuine idea that a lot of us could identify with, but the fact that it was this huge, life altering thing to the character after years of supposedly having it that made it funny.

Because, while it does change some small things for all of us, it just isn't that big a deal.

[optimist]

FWIW, I read a study that explored how best to approach the stigma and it concluded that humorous approaches reinforced the stigma rather than combating it. You may be able to find it online through PubMed.

 

So far, I've only really heard one herpes joke that made me laugh. The joke: "Everyone has herpes" is both true and what someone tells you right before they give you herpes.

 

 

[optimist]

What is assumed about you, and what you assume about others. Or any other insights you have that you think are important for the general public to know.

 

So many things, but off the top of my head...

 

- I'll start with how it affects me personally. It's assumed I pose a unique risk of transmission among my peers. This is incorrect. As a white, divorced woman in my late 40s in the U.S., I'm in good company with 50% of my peers being positive for HSV2. In fact, most people with HSV2 don't know they're infected, so considering I utilize all available methods of risk reduction (disclosure, daily antivirals, condoms), the level of risk I present falls smack in the middle between those who don't have it and those who have it and don't know it. However, when I disclose my status (which I always do), I am often perceived to be uniquely high risk.

 

- Most people have never been tested for HSV and assume they'd know if they or their partner have it. In the case of HSV2 specifically, 80-90% of those who have it don't notice upon contracting it and only roughly 12.5% have been diagnosed. This means that for every person out there who knows they have HSV2, there are seven others who have it and don't know it and therefore can't disclose or take precautions. I was one of those people before getting tested myself.

 

- Many people with very limited sexual histories have HSV2. In the U.S., in the 14-49 age range, 19% of women with a lifetime history of 2-4 sex partners are infected with HSV2. I would consider that a conservative sexual history. I personally was more active, but I would imagine the promiscuity stereotype would be especially unsettling to those with a history of very few partners.

 

- Some people who are very accepting of oral HSV1 (cold sores) are hesitant about partnering with people with genital HSV1. This is kind of illogical considering oral HSV1 asymptomatically sheds (on average) 5x more often than genital HSV1, but of course stigmas aren't logical. People who contract genital HSV1 were just lucky/unlucky enough to not catch it orally first, leaving them vulnerable to contracting it genitally.

 

- Statistics for genital herpes typically only include HSV2 and exclude HSV1 because location of infection can't be assessed through blood testing. The most common stat I see is "1 in 6 people have genital herpes." What this actually means is that a large number of people between the ages of 14 and 49 were tested. A significant percentage of these people had not yet had sex, so were aren't talking about sexually active people but all people within that age range. Among non-virgins in that age range, it is roughly 1 in 4 that tested positive for HSV2. And even then, that is an average within that vast age range and does not address gender (almost twice as many women are infected as men). So this stat not only excludes everyone with genital HSV1 but also makes it difficult for people to truly understand prevalence in their own dating pool. Rates are extremely low at 14 and much higher at 49 with the average in that vast age range being 1 in 4 among people who have ever had sex. And if we're talking lifetime risk that goes beyond 49, in the U.S., about 70-90% of people will contract HSV1 at some point and 40% of people will contract HSV2. Both very common.

 

- I see lots of posts from newly diagnosed women worried about future pregnancy. If you do the math on neonatal herpes, it is actually more likely to pass on neonatal herpes if you do not have genital HSV2 upon becoming pregnant. This is because the greatest risk (by far) of passing on neonatal herpes is when a pregnant women contracts either genital HSV1 or genital HSV2 near the end of pregnancy. By contrast, the risk is extremely low when a woman has an established infection upon becoming pregnant. Studies indicate roughly 30% of pregnant women in the U.S. have HSV2 (and an unknown additional number have genital HSV1). Roughly 2% of women contract genital herpes during pregnancy and a fraction of those women contract it in late pregnancy (these are the very high risk cases). Furthermore, if you are in the minority of people with genital herpes who know their status upon becoming pregnant, additional precautions can be taken such as antivirals in late pregnancy to reduce risk further.

 

- I see people concerned that genital herpes means using condoms forever. If you've ever kissed someone who ever had a cold sore in their life, or you've given or received unprotected oral sex, you'll understand that it's all about risk tolerance and weighing maximizing risk reduction against other factors. Yes, using condoms maximizes risk reduction, but it is not a case of condoms = no risk while no condom = high risk. Many people, particularly long-term discordant couples, choose not to use condoms. In my particular case, as an asymptomatic woman who takes antivirals daily, condoms reduce risk of transmission from 2% per year to 1% per year.

 

- I've seen people ask if it's necessary for those who have HSV to use HSV specific dating sites. I think it's important to recognize that roughly 80% of adults have at least one type of HSV that can potentially be transmitted to an uninfected partner's genitals, so all dating sites are HSV dating sites in my opinion. Additionally, in using a mainstream dating site and disclosing to prospective partners, my experience has been that most people simply don't know their HSV status and some are aware they already have HSV or have already been in relationships with people who disclosed HSV.

[optimist]

Oh! Thought of one more...

 

I often see a narrative about people with genital herpes finding someone someday who will love them enough to accept them. Conversely, I see people judge others who shy away from relationships with people with herpes as just not loving them enough to be willing to take the risk. My own experience has been that many factors go into how someone perceives HSV and their willingness to have sex or a relationship with someone who discloses positive HSV status. Sometimes depth of feeling is a factor, often it is not. I truly believe someone can want to be with someone yet have too much anxiety to have a healthy sex life, which sucks for both people, and I also have encountered people who don't factor in HSV at all, regardless of how much or how little they like or love someone. Highly variable.

 

[optimist]

One more...forgive me! :)

 

I often see people refer to HSV2 as "more severe" than HSV1. This is incorrect. However, certain type/location combinations are more active than others in terms of shedding virus, and while the most common experience with all types/locations of HSV is very mild symptoms or no symptoms, for those who have symptoms, recurrences are more common with the more active type/location combos. For instance:

 

- Oral HSV1 has greatest prevalence, sheds most on average (25% of days), and I believe about 1/3 of people have noticeable symptoms (cold sores).

 

- Genital HSV2 has next greatest prevalence, sheds 14% of days on average, and 10-20% of people have noticeable symptoms.

 

- Genital HSV1 sheds about 5% of days on average. It's more likely than genital HSV2 to cause a noticeable primary outbreak, likely because it is the first contracted HSV infection while HSV2 is often contracted by people who already have HSV1. However, most people with genital HSV1 then have no further outbreaks or very infrequent outbreaks (on average, much less frequent recurrences than people with symptomatic HSV2 experience).

 

- Oral HSV2 sheds about 1% of days on average. Initial outbreak symptoms are not visually distinguishable from oral HSV1 but it is much less likely than oral HSV1 to cause recurrences. It is the least prevalent type/location combo of the four and presumably the least likely to be transmitted to a partner, considering the very infrequent viral shedding activity. I say "presumably" because studies have so far only addressed shedding rates and not transmission rates, but it is known that a majority of HSV transmission happens as a result of asymptomatic shedding.

[Trixie8]

This is great. Is knowing all of these stats and information a job for you? Some sort of occupation that helps you know all of this? Or have you (like a lot of us) just done the tremendous amount of research on your own time. Also, Can I ask... you stated you always disclose, do you have a timeline for that? Date one? Date three? When it comes up? Curious how other people choose to handle it.

[Trixie8]

There is a TV show (on Hulu I think), called Futureman. The main antagonist is a man who is trying to cure herpes. He repeats a line throughout the series that actually had me laughing, despite the fact that the character's delivery was very sad;

"They call it herpes simplex virus, but there is nothing simple about it".

 

 

I can't believe I didn't know about future man. I'll look that up ASAP. I have a list going of television shows or movies that have referenced it or use as comedic content. Looking to beef up that list as well. Thank you!

[optimist]

@Trixie8 I researched on my own time after testing positive. I did not get the info I needed from medical professionals so I turned to published research. All the seeming inconsistencies bothered me, so I often looked at the source data to understand why info appeared inconsistent. Working backwards like that helped me gain a better understanding.

 

I typically disclose either before I meet someone (but not in my dating profile) or after I meet and we've established mutual chemistry and they reach out to schedule a second date. When I disclose before meeting it's because the topic of intimacy arises in some way and I take the opportunity to open a discussion about safe sex expectations. Because I'm in a casual dating stage of life, I prefer disclosing very early because I'm more comfortable with partners who are generally accepting of HSV rather than making an exception for me specifically with some sort of long-term expectation in mind.

 

 

[Trixie8]

I prefer disclosing very early because I'm more comfortable with partners who are generally accepting of HSV rather than making an exception for me specifically with some sort of long-term expectation in mind.

 

 

Oh THIS. Is super interesting to me. What a healthy and open minded way of approaching.

 

[optimist]

@Trixie8 I'm glad my comment rang true for you. Also, in reference to your comment about keeping a list of shows that mention herpes, the show "Girls" mentioned oral herpes a couple times during the last season or two.

[WhatNow17]

@optimist thanks for sharing those stats! It's really helpful to have for my future disclosures.

 

@Trixie8 I'm not sure if this is because I'm now one of the ones the jokes are about but I've been hearing a lot more comments and jokes about herpes. On another forum someone mentioned that these jokes are usually worked in because a writer probably has herpes. To name a few; Grace and Frankie, 2 broke girls, family guy, shameless, Dave Chappell comedy special. All pretty much presented it as something devastating that you don't want...which I guess might be true if you don't have it. These jokes definitely still hurt, I usually don't find them funny and will sometimes change the channel. But something interesting I noticed are shows have started showing more compassion and understanding with HIV. Both shameless and how to get away with murder feature gay couples who disclose their HIV status and their partners end up being accepting and continue to have somewhat normal relationships. If HSV could be portrayed in a healthy and mature way I think we could get rid of the stigma or even if it was presented in a way that vocalizes that most people have this. HPV is starting to be somewhat normalized. Comedians Ali Wong and Amy Schumer have both disclosed their HPV status publically and almost like a badge of honor for having a fun sex life. Not sure this helps answer your question, I just wanted to share what I've noticed recently.

[optimist]

@WhatNow17 @Trixie8 I believe Inside Amy Schumer addressed herpes, as well.

[Trixie8]

@WhatNow17 I have New Girl, Fault in Our Stars, Shameless, Lovesick and a few others so far. This is all great. I don't like the jokes when they are told in ignorance. But I LOVE them when they are told with knowledge and truth and light heartedness, knowing about me. That's basically how I made it through being diagnosed originally. Anything you feel you've noticed is definitely worth sharing and relevant. I would like to get as much material and perspective as I can, to use to approach this.

[Trixie8]

@WhatNow17 Without having the intention to be dismissive of HPV, I find that to be a cop out when I share my status and someone discloses that to me in response. My mother is an OB/GYN nurse and her comment about HPV diagnoses is "Yeah, everyone but your nun" which is insensitive but how high the statistics of HPV are. HPV also is not a concern until mid life when you just need to keep an eye out for cancer. When people use HPV declarations as a form of brevity, I find that I selfishly think of that as a first world problem, it's kind of like saying "Yes, I get acne too" based on my experience. Its something you can feel good about disclosing because its frustrating, but I wouldn't call it shameful as we experience with Herpes. Trying to figure out to approach this empathetically.

[WhatNow17]

@Trixie8 I agree that there is less shame with HPV diagnoses and disclosures. I had a friend tell me out of the blue that a guy gave her HPV like it was nothing. I was taken aback by her openness and others about it, especially since my doctor was pushing the vaccine since I was 12. I don't think we'd ever see famous people disclose their HSV status. With HSV having less complications or side effects you would think it'd be the other way around as far as shame is concerned. But maybe the sensitivity of cancer or the idea of scary skin bumps leads people to be more accepting of HPV and not HSV.

[optimist]

@Trixie8 @WhatNow17 I've had the opposite experience with two doctors telling me they had no concerns about HSV but they were very concerned about HPV.

 

IMHO, because there was a need to convince parents to vaccinate children for HPV when a vaccine became available, excellent marketing was developed that put all types and locations of HPV under the umbrella term "HPV" in order to emphasize prevalence of HPV and explain why it was critical to be vaccinated early. The same could potentially be done with HSV. It would require referring to all types and locations as "HSV" instead of having a sliding scale of stigma for different types and locations. By my age, 93-95% of people have at least one type of HSV. I can't imagine that's less pervasive than HPV.

[WhatNow17]

@Trixie8 @Optimist good point. Maybe a vaccine is the only thing that can "normalize" and erase the stigma of HSV. The permanence of HSV is likely what scares people and causes them to dismiss people with it which makes us ashamed to have it. With a cure or full proof preventive medicine, it'll go from eww big scary HSV to dang that sucks you got it early but at least you can't pass it on now so all is well. The likelihood of that happening is slim so I think it's great that you're looking into educated yet lighthearted public awareness through media Trixie.

[optimist]

@Whatnow17 Have to disagree with the idea that permanence is the issue. Most adults carry 4 or 5 herpes viruses that are permanent and reactivate at times but do not carry stigma. Cold sores are permanent. EBV/mono is permanent and spread even more easily than HSV and can cause cancer in rare cases. The stigma related to genital herpes seems related to the fact that it is strictly contracted through sexual means. With EBV and HSV1, sometimes they are contracted through sex, sometimes not.

[optimist]

@Whatnow17 I'll add that the existence of the HPV vaccine seems to have made less difference in terms of stigma than the knowledge that HPV is so common (which became known as a result of marketing the vaccine). What I mean by this is that many people beyond the recommended age for the vaccine opt not to ask to be vaccinated and assume they have already been exposed and/or that HPV is just a normal risk that goes along with sex. The HPV vaccine addresses 9 different strains of HPV, but the marketing was done in such a way that many people see themselves as having been exposed to HPV or not exposed to HPV. They tend not to think "I might have been exposed orally but not genitally, and I might have already been exposed to type 16 but not type 18" as people seem to do with HSV types and locations. Edit to add: I actually did go ahead and request the HPV vaccine as an adult in my 40s because I thought I might not have been exposed to all the 9 types it covers, so why not take advantage of the existing vaccine, but I think I am in the minority in that regard.

[WhatNow17]

@optimist I honestly had no idea mono was permanent or that there were several variations of HPV and HSV (aside from 1 and 2). Thanks for sharing this information! I guess bottom line is more education on prevalence is what will help with the HSV stigma...and acknowledging that types are the basically the same thing, they just present differently and one shouldn't be flagged as worse than the other. I do hope more people decide to make the choice you did and get the vaccine since it protects against all HPV types.

[optimist]

@WhatNow17 There are 8 or 9 herpes viruses but only two types of HSV. There are many more types of HPV than are covered by the current vaccine which addresses 9 types (two that can cause warts, 7 that can cause cancer). The vaccine is recommended for people in the pre-teen to mid-20s range as this was the age range used in studies and the age range believed to benefit most from the vaccine due to how quickly people begin contracting various types of HPV after becoming sexual.

 

Yes, EBV (which can cause mono, usually if contracted after early childhood) is most infectious right after it is contracted, just like HSV. It then reactivates and is contagious from time to time without symptoms, again like HSV. How it differs is that it is passed through body fluids such as saliva and semen rather than skin-skin contact. A majority of people contract it by adulthood, again like HSV, though most people don't realize it unless they developed mono. Infection rates continue to increase in adulthood until almost everyone has it, just like HSV.

 

Edit to add: Other common herpes viruses that are lifelong and reactivate are chickenpox (which reactivates as shingles) and roseola.

[WhatNow17]

@optimist wow thank you sharing all this information! It makes me a little sad that all these viruses stay with you for life and usually cause no issue, but HSV 2 is the one getting all the negative attention. I'm sure most of the people I know that had mono have no idea it's still in their system. I wish this information was more widely shared so it wouldn't seem like a death sentence at diagnosis.

[optimist]

@WhatNow17 Some of these viruses do occasionally cause major issues, just like HSV sometimes does (encephalitis, meningitis). EBV and HPV can cause cancer, shingles can be devastating to elderly people. IMHO, HSV2 is closest in impact to HSV1, each of which tend only to get negative attention when the infection is genital rather than oral. This makes sense in certain cultures like the U.S. that have puritanical roots, and marketing probably played a role, as well. I think the nickname "cold sores" has also influenced how people see oral herpes and genital herpes so differently. And there is a case to be made for more concern about genital herpes in demographics with high HIV rates because genital HSV can increase risk of contracting HIV.

 

Looking at another aspect of HIV, you may recall that for many years those who contracted it through sex and IV drug use were shamed, while those who contracted it through blood transfusions were not. There's a puritanical influence in how the infections are perceived based on how the infections were contracted. Likewise, you will see people argue that oral HSV1 is not a STI while genital HSV1 is an STI. The emphasis is on the fact that oral HSV1 is most often not contracted through sexual means, though it is often transmitted from mouth to genitals via oral sex. So there's a distinction being made between how it was contracted rather than how it can be transmitted. However, in the case of HIV, regardless of how it is acquired, it is considered a STI because it is transmittable.

 

Cold sores have been normalized over a long period of time. And I think that's GOOD because oral herpes is very normal. It's unfortunate that normalization does not extend to genital herpes. The inconsistencies are really interesting to me, but I hope things change some day. I am somewhat hopeful in that I'm old enough to remember when HPV and HIV where both much more stigmatized.

[WhatNow17]

@Trixie8 I saw a comment from @thevica on another post. It made me chuckle and thought it would be a great addition to what you're looking for. It offers some comfort that I'm not alone in this. The comment was made in regards to someone concerned about dating a HSV + person "The majority of our planet has herpes anyway (67%). So technically, we are the majority, not you (haha)."