Last Updated on July 29, 2021 by Stacy Sampson, DO
A Nice Follow-Up to Yesterday’s Post – STI Hater-Aid
This morning, I read a great article about eradicating STI stigma and the stigma associated with genital herpes specifically.
It’s a rather long article and you can find it in its entirety here, but for those of you with as short of an attention span as I have, I’ll share the highlights. I should emphasize her writing is eloquent and I was thoroughly impressed with the detail she includes – it’s an excellent read – again, I encourage reading the full article, but I will make sure to include her words as they were written so you get the depth.
The author wrote this for her grad program. Here is what she says:
This is About Genital Herpes
Dr. Anna Wald, a virologist at the University of Washington, told the New York Times, ‘Herpes has a stigma attached to it that even H.I.V. doesn’t have anymore.’…Mondo Guerra publicly announced his HIV positive status on Project Runway and there was an outpouring of tears, love, and empathy.
This would not be the case for anyone who openly revealed that they had genital herpes on TV. Can you even imagine anyone doing that? We assume that one would have to be crazy to share such a shameful, stigmatizing, and personally damaging secret.
Genital Herpes: Actually, it IS a joke.
Ever notice the only time we hear herpes mentioned in movies or on TV is when it’s the butt of a joke? Genital herpes is an easy target for humor because it’s not fatal and the people who suffer from this STI are not usually considered victims.
Unlike HIV/AIDS, genital herpes is a relatively mild condition that does not usually warrant the seriousness or sensitivity that society grants fatal illness. Instead, genital herpes is understood to be a punishment, or something you ‘bring upon yourself’. People with genital herpes aren’t thought of as victims; they’re thought of as sluts, monsters, lepers, or just stupid.
When we combine these factors, people with genital herpes are obvious subjects for ridicule.
So why are these jokes so popular? And why isn’t anyone saying anything about how miserable it must be for people with genital herpes to hear them and have to laugh along in order to avoid detection?
The jokes generally go unchecked since those who find them offensive or cruel are silenced by the fear of association with genital herpes, or the fear of being exposed as having genital herpes. Both outcomes carry the very real risks of shame, judgment, and rejection…. At the root of the ‘herpes humor’ phenomenon is the extreme stigmatization of genital herpes as a grotesque or disgusting indicator of promiscuity and infidelity.
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More than 51 million Americans are cheaters and whores, or so we’re told
About 1 in 5 or 1 in 6 people in the U.S. have genital herpes. That means there are currently over 51 million Americans with genital herpes right this very second. That’s more people than there are Latino Americans (46.9 million) or African Americans (37.6 million).
What’s the likelihood all of those people are ‘sluts’, or ‘deserved’ to get herpes?
Celebrities often use their fame to help raise awareness for diseases or health-related causes. (Think: Michael J. Fox for Parkinson’s Disease.) When it comes to genital herpes, however, no celebrity would risk the stigma of association or exposure. As a result, the only time we hear about a celebrity having genital herpes is in the context of a scandalous rumor, bitter divorce, or lawsuit…. Then, wait. It’s not safe to be open about having genital herpes yet, you’re a liar and a cheater if you aren’t?
Seems like you’re damned if you do, damned if you don’t here.
It’s almost as if we want people with herpes to wear a scarlet ‘H’ on their clothes so we know when to run away screaming.
This seems a little much for a disease that is, in actuality, a relatively mild condition with hardly any health complications that can be managed quite well with medication.
Herpes, apparently, makes you dirty and also a monster.
Considering the graphic and grotesque nature of genital herpes images on the internet, it isn’t difficult to explain why leprosy is a common metaphor for genital herpes….
Hansen’s Disease [leprosy] is probably the most stigmatized illness in the history of illness, and by associating it with genital herpes – one of the most stigmatized illnesses in contemporary western culture – the metaphor mutually harms sufferers of both herpes and leprosy, and sets back the goal of destigmatization for both diseases.
Another prevalent metaphor for genital herpes is the monster metaphor. It is often used to describe the virus itself, i.e., ‘the herpes monster’, or by people with genital herpes to describe themselves, i.e., ‘I am a monster.’ Implicit in the monster metaphor are feelings about genital herpes as a manifestation of evil. Susan Sontag wrote: ‘Feelings about evil are projected onto a disease. And the disease (so enriched with meanings) is projected onto the world.’
As a result of this projection, people with genital herpes are sometimes considered predators or dangerous to the community at large.
Another common metaphor surrounding genital herpes, as with many other STIs, is the idea that someone infected with HSV is ‘dirty’ and someone who is not infected is ‘clean’. This metaphor is commonly used in reference to STIs and dates back to the nineteenth century. According to Sontag, ‘Specific diseases, such as cholera, as well as the state of being generally prone to illness, were thought to be caused by an ‘infected’ (or ‘foul’) atmosphere, effusions spontaneously generated from something unclean.’
Though we now understand that the cause of infection is due to viruses or bacteria rather than miasma, the dirty/clean metaphor is still pervasive. Today, the word ‘dirty’ also carries a sexual connotation, and for this reason, it is a popular metaphor for people who have genital herpes.
Do we really want to keep perpetuating these myths about people with herpes as dirty, scary monsters? Forever? Sure, maybe putting down those who have genital herpes is a way to make people without herpes feel better but the chances are high that those people will someday contract herpes and what then?
That’s when they – if not everybody – has to face the fact that after vehemently propagating and internalizing this stigma for years and years, they are now stuck inside a shitty social prison of their own making.
Who’s the monster now?
Talking bout the herp
There are two distinctive types of stories people tell about having herpes – those that internalize the horrible stigma surrounding the disease, and those that reject it.
The first type that internalize stigma (I am dirty, I am a whore, I am a monster) are pretty upsetting. When people believe all that negative stigma about people with herpes to be true about themselves, their experience sounds unbearable…. These stories are heartbreaking and make it sound like getting genital herpes is the end of the world. And isn’t that what we are all so afraid of? The good news is the majority of stories like this come from people who have been recently diagnosed with genital herpes.
Narratives from people who have had the virus for a number of years, however, are much more positive. Instead of internalizing all the stigmas and metaphors about herpes, they reject them. They tell their stories with the goal of helping others feel okay about having herpes.
Sounds to me like dealing with the stigma and shame of herpes is a lot worse than dealing with the disease itself.
Is it really worth the agony?
Mind over Stigma
Here are some things you can do:
- Add ‘people with STIs, including herpes’ to your mental list of groups that face discrimination (like GLBT folks, people with disabilities, women, Muslims, African Americans, Latino Americans, etc). Recognize their struggle and support them when you see discrimination happening.
- Take a stand against herpes or other STI jokes that would make someone who has it feel ashamed or uncomfortable. Step in and say, ‘Dude, that’s not funny. How would you feel?’
- Pay attention to language. Pay attention to metaphors like monster, leper, and dirty or clean. Try to stop using them yourself, and try to get your friends to stop as well.
- Pay attention to stereotypes. Correct people when they try to say that being a slut means you probably have herpes, or that people with herpes are liars and cheaters.
- Tell your story. If you have herpes, it may be too scary or too risky to come out about having herpes in public or to your friends and family. But you can share your story anonymously either online or using a pen name. Share your experience to help dispel the myths about herpes, and to let others know that they are not alone and that herpes is not the end of the world.
- If you’re in college, investigate your health center and on campus sex ed resources. Pay attention to how they talk about herpes and whether or not their approach is reinforcing or rejecting stigma. If you don’t like what you see, try to change it.
- How to Not Give an Eff about Having an STI
- All about Herpes Disclosure
- STI/STD? What Now? Your Ultimate Reference Guide
- STIs – The New Scarlet Letter
- STI Stigma
- Does this article inspire you to share your STI/STD story?
- The 1st Time I Heard About STIs/STDs
- STI Forums
- Are you looking for STI Resources?
- STI Interviews
References
- Symptoms
- Armangue, Thaís, et al. “Frequency, symptoms, risk factors, and outcomes of autoimmune encephalitis after herpes simplex encephalitis: a prospective observational study and retrospective analysis.” The Lancet Neurology 17.9 (2018): 760-772.
- Groves, Mary Jo. “Genital herpes: a review.” Am Fam Physician 93.11 (2016): 928-934.
- Jonker, Iris, et al. “The association between herpes virus infections and functional somatic symptoms in a general population of adolescents. The TRAILS study.” PloS one 12.10 (2017): e0185608.
- Verhoeven, Dirk HJ, et al. “Reactivation of human herpes virus-6 after pediatric stem cell transplantation: risk factors, onset, clinical symptoms and association with severity of acute graft-versus-host disease.” The Pediatric infectious disease journal 34.10 (2015): 1118-1127.
- Croll, Benjamin J., et al. “MRI diagnosis of herpes simplex encephalitis in an elderly man with nonspecific symptoms.” Radiology case reports 12.1 (2017): 159-160.
- Testing
- Tan, S. K., and B. A. Pinsky. “Molecular Testing for Herpes Viruses.” Diagnostic Molecular Pathology. Academic Press, 2017. 89-101.
- Piret, Jocelyne, Nathalie Goyette, and Guy Boivin. “Novel method based on real-time cell analysis for drug susceptibility testing of herpes simplex virus and human cytomegalovirus.” Journal of clinical microbiology 54.8 (2016): 2120-2127.
- Hauser, Ronald G., et al. “Reply to Galen,“Screening cerebrospinal fluid prior to herpes simplex virus pcr testing might miss cases of herpes simplex encephalitis”.” Journal of clinical microbiology 55.10 (2017): 3144.
- Hauser, Ronald G., et al. “Cost-effectiveness study of criteria for screening cerebrospinal fluid to determine the need for herpes simplex virus PCR testing.” Journal of clinical microbiology 55.5 (2017): 1566-1575.
- Bohn-Wippert, Kathrin, et al. “Resistance testing of clinical herpes simplex virus type 2 isolates collected over 4 decades.” International Journal of Medical Microbiology 305.7 (2015): 644-651.
- Treatment
- Wilhelmus, Kirk R. “Antiviral treatment and other therapeutic interventions for herpes simplex virus epithelial keratitis.” Cochrane Database of Systematic Reviews 1 (2015).
- James, Scott H., and David W. Kimberlin. “Neonatal herpes simplex virus infection: epidemiology and treatment.” Clinics in perinatology 42.1 (2015): 47-59.
- Jeon, Young Hoon. “Herpes zoster and postherpetic neuralgia: practical consideration for prevention and treatment.” The Korean journal of pain 28.3 (2015): 177.
- Eppink ST, Kumar S, Miele K, Chesson H. Lifetime medical costs of genital herpes in the United States: Estimates from insurance claims. Sex Transm Dis. (2021).
- Breier, Alan, et al. “Herpes simplex virus 1 infection and valacyclovir treatment in schizophrenia: Results from the VISTA study.” Schizophrenia research (2018).
- Varanasi, Siva Karthik, et al. “Azacytidine treatment inhibits the progression of herpes stromal keratitis by enhancing regulatory T cell function.” Journal of virology 91.7 (2017): e02367-16.
- Prevention
- Abdool Karim, Salim S., et al. “Tenofovir gel for the prevention of herpes simplex virus type 2 infection.” New England Journal of Medicine 373.6 (2015): 530-539.
- Jeon, Young Hoon. “Herpes zoster and postherpetic neuralgia: practical consideration for prevention and treatment.” The Korean journal of pain 28.3 (2015): 177.
- Marrazzo, Jeanne M., et al. “Tenofovir Gel for Prevention of Herpes Simplex Virus Type 2 Acquisition: Findings From the VOICE Trial.” The Journal of infectious diseases (2019).
- Chi, Ching‐Chi, et al. “Interventions for prevention of herpes simplex labialis (cold sores on the lips).” Cochrane Database of Systematic Reviews 8 (2015).
- Colombel, Jean-Frédéric. “Herpes zoster in patients receiving JAK inhibitors for ulcerative colitis: mechanism, epidemiology, management, and prevention.” Inflammatory bowel diseases 24.10 (2018): 2173-2182.
- Transmission
- Oevermann, Lena, et al. “Transmission of chromosomally integrated human herpes virus-6A via haploidentical stem cell transplantation poses a risk for virus reactivation and associated complications.” Bone marrow transplantation (2019): 1.
- Tronstein E, Johnston C, Huang ML, Selke S, Magaret A, Warren T, Corey L, Wald A. Genital shedding of herpes simplex virus among symptomatic and asymptomatic persons with HSV-2 infection. JAMA. (2011).
- Pandey, Utsav, et al. “Inferred father-to-son transmission of herpes simplex virus results in near-perfect preservation of viral genome identity and in vivo phenotypes.” Scientific reports 7.1 (2017): 13666.
- Ramchandani M, Selke S, Magaret A, Barnum G, Huang MW, Corey L, Wald A. Prospective cohort study showing persistent HSV-2 shedding in women with genital herpes 2 years after acquisition. Sex Transm Infect. (2018).
- Ceña-Diez, Rafael, et al. “Prevention of vaginal and rectal herpes simplex virus type 2 transmission in mice: Mechanism of antiviral action.” International journal of nanomedicine 11 (2016): 2147.
- Omori, Ryosuke, and Laith J. Abu-Raddad. “Sexual network drivers of HIV and herpes simplex virus type 2 transmission.” AIDS (London, England) 31.12 (2017): 1721.
- Aebi-Popp, Karoline, et al. “High prevalence of herpes simplex virus (HSV)-type 2 co-infection among HIV-positive women in Ukraine, but no increased HIV mother-to-child transmission risk.” BMC pregnancy and childbirth 16.1 (2016): 94.
Rolland
Can I just say what a comfort to uncover a person that genuinely knows what they are discussing online.
You certainly understand how to bring a problem to light and make it important.
A lot more people need to read this and understand this side of
the story. I was surprised you’re not more popular given that you certainly have the gift.
Jenelle Marie
Hi Rolland!
Thanks so much for the encouragement! Rest-assured, the website is growing exponentially right now (I launched in April of 2012) and I’ve received well over 100,000 views already!! However, you’re right, there’s soooo many more people to be reached. In time, I believe this will become a very popular place for people to seek information and comfort!!!
Thanks again for your support!
Kimberly
Saved as a favorite, I really like your site!
Jenelle Marie
Glad to hear it! Thank you!
Giuseppe
You could certainly see your expertise in the work you write.
The world hopes for more passionate writers such
as you who are not afraid to mention how they believe. At all times go after your heart.
Jenelle Marie
I couldn’t agree more! Thanks so much for your encouragement!
Joe
Glad there is a forum where it is recognized and not stigmatized!
Jenelle Marie
Yea, there are not a lot of them out there, that’s for sure – we aim to change that! 🙂
Just Me
I recently found out that my husband cheated on me, and brought that mess into our bedroom. Now I have it. For people to be called whores, sluts, and so forth is wrong. I am a prime example of being wronged by my husband, and I haven’t done anything to get this for myself, but sleep with my own husband. It is good to know that someone out there isn’t judging me.
Jenelle Marie
Most definitely! You’re a great example of how genital herpes and all STDs can affect all kinds of people. Name calling and ostracizing someone because they contracted one is harmful and is simply inaccurate.
I would even go as far as saying those who contract an STD by being less careful with protection or choosing not to be in a monogamous relationship also do not deserve those labels. Making a mistake with one’s sexual health or making riskier choices does not mean someone is a bad person and deserves to be cast aside as dirty, slutty, etc.; this is especially true when considering the majority of people with STDs are not aware they have one because they are asymptomatic or the symptoms are so mild they get left unnoticed.
Even the most responsible of individuals can still contract an STD – most are not tested for and the ones contracted via skin to skin contact (like genital herpes) are not always negated by protection when the area of infection is not fully covered.
Responsible, taking risks, married, raped, cheated on, any one of those situations can result in an STD and none of those indicate a person who deserves to be treated poorly or who is worthy or those names!
At The STI Project, you are definitely NOT getting judged and there are others who agree – the more I talk about this to the people I meet, the closer we come to treating others with the kindness they deserve! We’ve a little ways to go yet, but know there’s someone out there making a difference in how you’ll be perceived. 🙂 Thanks so much for your message, Just Me; you make an excellent point!
Helena
This article is a breath of fresh air.
I contracted Herpes from my boyfriend through oral sex, he happened to have cold sores on his mouth at the time we didn’t notice one forming.
As the doctor said to me at the time of my diagnosis, its just cold sores in a different place. People aren’t judged nearly as harshly for having a cold sore on their face.
The stigma is difficult to deal with, as if explaining to people. As time goes on the symptoms lessen as does the issue within your mind, no one is alone. 1 in 6 have it.
Jenelle Marie
Hi Helena –
I’m so glad you found this article refreshing!
Isn’t it a wonder that the same virus (just often a different strain – or in your case, the same strain, different location) in alternate places can be treated so differently?!?! It seems a bit ridiculous when one breaks down the actual facts. The sentiment is because of the association with how it was contracted – people have cultivated a terror and disdain for things that happen as a result of sexual activities. The reality, however, is that tons of people have genital herpes – 1 in 6 or 1 in 5 depending on the country and the statistical origin. It’s estimated that up to 80%-90% of the population has some form of the herpes virus and 1 in 4 of those people have herpes genitally! When we start to talk about the actual numbers out loud, people slowly change their tunes, that’s for sure. It’s these conversations that will truly begin to change that seemingly silly and highly stigmatized general opinion.
Thanks so much for sharing and commenting.
Christina
All I can say is thank you!
I felt heart broken and ashamed when I was diagnosed. I’m not a whore that sleeps around but I felt like everyone else would think that. It has gotten easier as time goes by but I still feel embarrassed because of all the stigma attached. I haven’t dated much or slept with anyone since I was diagnosed. I feel like I don’t know what to say, thinking about having to tell a future partner. This article made me feel so much better. I wish it was talked about as much as other stds.
Jenelle Marie
Hi Christina –
You are VERY welcome! I’m so happy to hear this has helped a little bit. I couldn’t agree more and I find it so incredibly frustrating sometimes the immense stigma that gets placed on everyone with an STD. It’s really just a result of ignorance – most are completely unaware of how many people have an STD and that it’s not at all an indicator of someone’s character. We’re getting there – we have a lot more to do, of course – but I’m determined to help make life easier for others than it was for me and for so many years! Thanks again for your message!
Ole
Today 95% of population are infected with HSV1 (oral herpes) and 25% with HSV2 (genital herpes) with or without any symptoms. Most of infected people don’t even know that they are infected because herpes test is not included in regular checkups. In 50 years or maybe even sooner 95% of population will have HSV2 as well and only those who are lucky to be immune to the
virus will remain herpes free. It is just a matter of time when those believing they are “clean” will join the Club. So everybody should hope that the remedy will be found soon because we are all in the same boat.
Jenelle Marie
Hi there Ole!
Do you have a link to share in terms of the statistical information you’ve mentioned? My references turn up slightly lower numbers, albeit, high, nonetheless… It’d be nice to be able to substantiate your claims.
You make a great point though in that a herpes test is not commonly included in regular STD testing.
Most people are just not aware of how many people have and are living with STDs, because they don’t get talked about nearly as often as they should, which, further makes the stigma surrounding them all the more frustrating – it affects soooo many people negatively.
Thanks for your message!
Dan
I was diagnose with Genital Hsv1, i dont know when i did contracted this!
But i can assure you my only 2 ex girlfriends are decent girls; and maybe they did not know
They had the H, cause many times the virus goes dormant!
Well i feel bad about this, but im not a slut or a dirty person and my ex arent either.
And its true thats what people think at first; Ive been married 1 year, and with her 4 years,
This Hsv1 was dormant for 5-6 years, and the first thing my wife told me was that i cheated.
I was devastated, the i thought she was the one that cheated! But she tested negative!
This is a common virus that affects many people in the
World. Why call people dirty names, many get this by mistake and not
On purpose!!
I like how you write this!
This should be out in the news!
God Bless!
Jenelle Marie
Hi Dan –
Thanks for your message. HSV 1 & 2 affect all kinds of people whether they are decent or otherwise and it’s certainly not an indicator someone is ‘dirty’ or a slut – you’re a perfect example! So, I’m not at all surprised to hear you contracted it but are unsure who transmitted it to you. That’s quite common. Especially with genital HSV1, it’s very common for one to contract it via oral sex. Some people experience cold sores (herpes outbreaks on their lips) and others don’t while still carrying the virus. I’m guessing that’s how you contracted it as one of your exes likely had the HSV1 virus orally. Anyhow, it’s neither here nor there now that you have it, really; it’s more important you know it does not have to define you and that your wife understands how common the virus is and how it can remain dormant or asymptomatic in many people for years before they experience symptoms. It sounds like you two are doing your research!
So, yes, I totally agree – there should be absolutely no name-calling! The name-calling is a product of poor information/education, and that’s what we’re working hard to change here at The STI Project. 🙂 Thanks so much for the encouragement! In time, more will be aware of the prevalence of all STDs and eventually we will be able to break the stigma. In the meantime, contributions to the conversation such as your own right here are incredibly helpful. Thanks again for your response!
Nicole
What a great article I was smiling and nodding whilst reading all of those things. I HATE in the movies when they make jokes about it and I feel I have to awkwardly laugh.
I got the disease cos I was infatuated and trusted a guy, and then I stayed with him far too long because deep down I thought who will ever want me? What if I find someone I desperately love and they can’t deal with this and walk away?
The sad thing is that this rarely affects my life now the only time I get a outbreak is if I’m really stressed and then I know what’s happening and I start to thin positively and it goes away, the outbreaks aren’t even bad.
My friends always will cut someone down now if they hear herpes jokes as they know how it makes me feel and they know I’m a regular girl and shouldn’t be made to feel terrible.
I think in my head all the time that if I somehow became famous I would stand up for herpes and increase the awareness about it and try to make a change but it seems like we’re too far gone now.
I’m lucky I have the friends I do, I one day expressed to my friend how I feel no one will love me and that’s why I’m in the relationship with the guy who gave it to me and she said that’s ridiculous what’s not to love about you look at you. And that gave me the courage to leave a relationship that hurt me from day 1.
Thanks once again for that article.
Jenelle Marie
Hi Nicole –
How nice to hear this article touched you.
I totally agree – my bf and I just watched the movie Pitch Perfect and there was another herpes joke… It’s just always so awkward and it bums me out knowing soooo many people sit through those jeers not knowing how to respond. It’s even more bothersome they get written into scripts at all. Anyhow, he and I exchanged looks on the couch and rolled our eyes; because of what I do, I can now make it known how ridiculous those jokes seem to me. It’s refreshing, but there were years I sat oddly not feeling comfortable laughing, but also not wanting to react differently than the crowd lest I be found out.
Cheers to you for having the strength and finding the self-respect to make a positive choice for yourself without settling! You’re an excellent example of how an STD diagnosis can break someone down, but how it can work also toward strengthening someone by helping them stand up for themselves and garner the love and respect they deserve despite their infection!
Thanks so much for sharing your thoughts!
Jaye
I was diagnosed three days ago. I’ve only had one sexual partner, who I’ve been with for almost four years. He has had one coldsore on his mouth once, during which time we were very careful and refrained from sexual activity. Now, a year later, the virus has manifested in me for the first time. I was devastated. Apart from the pain and illness that comes with a primary infection, I was (irrationally) ashamed. I’m lucky to have wonderful, supportive, non-judgmental parents, partner and sibling, but that’s as far as it goes. I’m trying to fight through years of stigma movies and peers etc have drilled into me, and your site is helping me to do that. It’s comforting to know that I’m not alone, and that there are so many people out there who understand and know I’m not dirty, unclean, a whore, a slut and all those other horrible ideas that follow HSV around (ps I hate words like “slut” anyway. The amount of sexual activity a woman engages in is her own business and is not shameful no matter how much or how little). I just hope that with sites like this raising awareness, we can fight these ridiculous ideas and help people with HSV and without alike understand that it is not about being dirty, it’s just a virus that’s alarmingly easy to contract.
Jenelle Marie
Hi Jaye –
I couldn’t agree more – the stigma is, by far, the hardest part of any STD diagnosis. It’s frustrating, to say the very least. We can definitely alter society’s perception; it’s just going to take some time and some hard work, but I’m in it for the long-haul. So, rest assured, I’ll still be here fighting the good fight, because messages like yours remind me how important it is to continue.
Thanks so much for letting me know this has been helpful – I really appreciate the feedback. I know how hard it can be at first. It will get better in time, but I know that doesn’t help you a whole lot right now; what a blessing you’ve got a really good support system!
You’re an excellent example that STDs happen to all kinds of people, are not at all an indicator of one’s sexual proclivity (despite that being no one’s business anyways, of course), and you’re definitely not alone. There’s an army of us, mostly silent, but an army, nonetheless.
Endora
Thank you for your hard work on bringing this information to light. The STD stigma has a long history and only clear information and thoughtful discussions will help to make a change. I have had this virus for over 24 years, contracted from my husband, before he had any symptoms. For your information he regularly used condoms as we of an age where AIDS was emerging and the use of condoms was considered the right thing to do. Today I have had the awkward discussion of my carrying this virus and the responses’ have not been positive. Asking one’s partner to don a condom seems to be too much, what has happened to “no glove, no love”? Everything I read says that all STD’s are on the rise. That those above 55 years of age are contracting STD’s in large numbers. This is a sad trend, as those of the elder generations also believe, all be it falsely, that only the unclean and promiscuous use protection, like condoms. Herpes, Hep C, AID’s, syphilis, gonorrhea, genital warts, all have dirty descriptive words associated with them and this will only change with education. Keep up the good work, and thank you so very much for doing your part!
Jenelle Marie
Hi Endora –
Thanks so much for your comment – you make a great point; condoms have become less and less the norm, and it’s strange, because it should be the other way around. We have so much more information available to us at our fingertips, however, lack of knowledge about one’s sexual health persists, and our ‘hook-up’ culture does very little to aid in the overall health and sexual responsibility of others.
You’re right, though, too, the above 50 generation is one of the populations with the largest increase in percentage of STDs – they’re still the least affected, but the increase in that demographic is greater than any other for the reasons you’ve mentioned: they just don’t think it’s an issue that affects them, and really, because all STDs are increasing right now, it’s an issue that has the potential to effect all sexually active people.
Thanks again for your thoughts and your support – both are very much appreciated!
Tisa
I’m so glad that this site exists. I can’t tell you how hard it is always seeing how people like to stigmatize and make fun of people who have herpes. I was diagnosed with this is 2010, and I was totally devastated when I found out. It wasn’t because I was a slut, a whore, or anything remotely close to that, because I’m none of those. I just found out that I was in a long-term relationship with an unfaithful man I couldn’t trust, and he had no problem knowingly passing this disease to me. So, this all makes it so much harder when people automatically throw the ‘disgusting/whore’ stamp on people who have herpes. Although I’m in the medical/health field, I was still kind of on the fence about the entire herpes thing. I wasn’t necessarily judgmental. I just had slightly the wrong ideas about it, such as believing that people who had it were constantly suffering from boils and sores all the time. But I still loathed the fact that people were ridiculed for this, and I’ve never seen it as something to laugh about. I actually felt bad for anyone to have to go through that at all. But in September of 2010, when I found out from a culture that I had HSV2, I wanted to die. I thought it was the end of the world because of this. I even lost an ex boyfriend behind this because he was stuck on stigmas and couldn’t see beyond the herpes. I’m fortunately someone who doesn’t even have outbreaks, ever. The only time I did was when I was first diagnosed, very shortly after my encounter with the man who transmitted it to me. All of that being said, I’m happy to have been informed of this website because so many people really need this support dealing with these issues.
Jenelle Marie
Hi Tisa –
I totally understand where you’re coming from! When it happens to you, your whole perspective changes, because so few people are aware of how prevalent STDs are among regular, everyday people – misconceptions are everywhere, and it’s usually not until someone’s faced with an infection themselves they realize both how insignificant the actual infection can be and how inaccurate the information surrounding it is.
Thanks so much for your thoughtful comments and for letting us know the site was helpful!
Erin
I have to say: a lot of the stigma people are complaining about is being perpetuated in the above comments. Even those who’ve contracted herpes rush to assure others they are not sluts, whores, promiscuous, easy, dirty, etc., etc. The assumption that they are the unique ones is stigmatizing! The assumption that someone who sleeps with a lot of other people deserves to be called those words, and perhaps even deserves herpes, is stigmatizing! Even after I disclosed to family members, they made similar comments: to them, I was different than the “not decent” sluts. The people we got it from, well, those were the dirty ones! The logic is completely screwed up.
Well – I did have sex with a lot of people. I often did not use a condom, because I was only concerned about pregnancy and was on the pill. After all, STDs happened to other people, not me. However, since I’m almost positive I got it from someone who had all the risk factors for herpes and could not have been a bigger a** , the stereotype is preserved for anyone I tell. That allows them to promptly forget that I made lots of choices up until that point that weren’t very smart (and thus can never be 100% sure who I got it from). But no one wants to talk about that. We just want to focus on the faithful wives and virgins who caught it from the first and only person they’ve had sex with, and to continue reiterating that “Just because someone has herpes doesn’t mean he or she is promiscuous,” thinking illogically that that wil reduce the stigma. Until we’re comfortable accepting others’ (consensual) sexual behaviors, promiscuity and all, the stigma will remain.
To be clear, I am not saying that I *should* have been making those choices. I realize now it was my unhealthy way of dealing with depression. But depression, trauma, and the like are behind many poor decisions; the answer is never to shame people for those decisions, but to have more compassion.
Lastly, plenty of people have lots of sexual partners and are completely happy. Many sex partners does not always signal a pathology, but just a healthy sex drive!
Jenelle Marie
Hi Erin –
If I’m understanding you correctly, we’re of a very similar mindset, actually, and you make some excellent points.
Here, at The STI Project, we believe in a modern-day approach toward sexual health – sexual responsibility. In two weeks, I’ll be explaining this philosophy in-depth via a podcast; so, stay tuned for that, but since you’ve brought it up here, I’ll expand. What we’d like to see is everyone becoming fully aware of their risks and how to mitigate them before choosing to engage in partnered sexual activities. At which point, whether you’ve had sex with one person or hundreds, your sexual health is your responsibility and your responsibility alone. With a comprehensive education, some people will choose to wait to engage in activities with others, some people will choose to instill a comprehensive safer sex routine as part of their sexual forays, and others will choose to accept their risk in lieu of the reward they’re seeking (sex) without utilizing all or some of the ways one can reduce risk.
I should make sure I’m clear here: sexual responsibility does not mean those who ‘aren’t responsible’ are then categorized in a particular way – no one has the right to categorize anyone, really. Sexual responsibility says we are the makers of our destiny – to be a bit philosophical. We are responsible for ourselves and ourselves alone. That we engage in sexual activities with or without some or all of a comprehensive safer sex regimen with one person, one hundred people, or one asshole is our prerogative and none of that means we’re sluts, whores, or promiscuous. Should you then, regardless of your approach (even the ‘safest’ practices contain some level of risk), contract an infection, you’re ‘at fault’, and it’s your responsibility – you’re not a victim (there are very few instances where someone is actually a victim – rape would be one), no one else is to blame, and that’s o.k. That’s part of taking responsibility for your sexual health and yourself at large. Sex – all kinds – can come with hefty consequences quite equal to their rewards.
Where your frustration is coming from, I think, is that it might seem like we’re favoring ‘those poor, unfortunate virgins, housewives, and good ‘clean’ girls and boys who contracted an STD from those bad, mean, assholes out there.’ I’m of your ilk, actually, and I contracted, or, at least, was diagnosed, after having engaged in activities with more than my fair share of men – well, I don’t know, ‘more than my fair share’ is rather subjective too, and, at the time, I thought it was just the right amount. 😉 I digress. Anyway, all of that’s a load of crap, really. It’s all so incredibly subjective, and, although I respect everyone’s right to their own opinion, I’m entirely over our social constructs that say a woman/man can do everything under the sun other than insert a penis into a vagina and still consider their virginity unmarred. Bullocks. Complete and utter bullocks, I say. (Laci Green has a great YouTube video out there about the abolition of the term ‘virgin’, and I highly recommend watching it, if you haven’t already.)
The picture we’re trying to paint here (on The STI Project) is that people contract infections and diseases from ALL walks of life and from all sexual backgrounds – some of those people will, naturally, be people who considered themselves virgins, who were cheated on or raped, and others will have enjoyed a fruitful sex life – go them! NONE of those individuals deserve to be labeled as whores, sinners, harlots, sluts, dirty, trashy, damaged-goods, tainted, pathological etc. – speaking of depression and pathology, you might find an article I wrote for TakePart.com about STDs and Mental health interesting! Therefore, if you want to call your actions promiscuous, that’s certainly o.k. – they’re your actions, and that’s your business. However, you are not just that label – I don’t care how many people you banged – go you! So, the reason we allow someone to share their perspective without simultaneously saying, ‘Now, now, you weren’t actually a virgin, were you?’ or ‘The person you think you contracted an infection from wasn’t any worse of a person than you are,’ is because everyone needs an outlet, a place to share their story, so they can heal and grow. And all of those perspectives need to be heard in order to break the stigma. The stigma – the labels – are what keep people from talking about their experiences, from getting tested, from telling potential partners, and the list goes on.
Keep in mind, I talk very candidly about how I don’t blame anyone, nor was I particularly angry at some mean, ogre of a man for giving me an infection because of the sexual responsibility concept – just as you’re indicating! Your story adds to that mix, and would be a refreshing perspective. *hint hint* 🙂 So many people – as I initially did – believe the stigma about themselves. They feel they have ‘sinned’, they are ‘damaged’, etc. And it’s, typically, not until people meet others with an STD or hear those alternative takes on their experience that they begin to feel otherwise.
Anyhow, my reply was longer winded than I anticipated. 🙂 Thanks so much for an excellent comment and thought provoker, Erin!
Erin
Hi Jenelle. Thank you for replying to my post. I apologize for the delay in responding – I’ve been quite busy and distracted these past couple of weeks. Anyway, I first want to acknowledge that some of your previous comments did suggest to me we might have similar philosophies, though I hadn’t quite thought of it in terms of us all (regardless of sexual history) taking responsibility for our own (health) destinies.
Very interesting video about the use of the word virgin. Despite having a sociology background, I had never considered how much of a social construct virginity is.
I read the Pediatrics article and see my adolescent and early 20s self in those statistics. It makes me think of the concept of a syndemic, which, if you haven’t heard of it, has been used to explain complex interactions between risky behaviors and poor health outcomes. Some have suggested it’s overly focused on risk rather than resilience, and they might have a point.
Finally, this is all in the context of recently being dumped after my disclosure – it looked like things might work but he changed his mind. I will respond to your “interview” questions, though it may take some time, and use that as an opportunity to explore this episode in a little more depth.
Jenelle Marie
Hi Erin –
No apologies are necessary at all – I get the myriad of things you’re juggling right now – I’m just happy to hear back and that my response was not poorly received!
Until your mention, I had not yet heard of the term syndemic, specifically, but, I think, the concept certainly applies – at least, in so far as the definition I came across “A syndemic is defined as the convergence of two or more diseases that act synergistically to magnify the burden of disease.” HIV and tuberculosis or HIV and Hep C are the two that come to mind off of the top, although a number of combinations apply…. I’m even more interested, though, in the intersection of the syndemic itself and sociological/socio-economic causation, or syndemic theory, if you will, like you’ve mentioned with the risky behaviors and poor health outcomes – “syndemic theory is that diseases do not exist in a social vacuum nor solely within the bodies of those they inflict, and thus their transmission and impact is never merely a biological process. Ultimately, social factors, like poverty, racism, sexism, ostracism, and structural violence may be of far greater importance in the extent of disease spread and the toll taken in human well-being than the nature of pathogens or the bodily systems they infect.” FASCINATING and something I’ve been messaging since the website’s inception without being aware of the term itself or the breadth of research that’s out there!
Thank you, kindly, for pointing me in that direction.
That you’ve recently dealt with a partner who was not willing to consider the risk makes the situation so much more trying – relationships are difficult enough, then couple them with an STI/STD, and all composure can crumble at a moment’s notice.
Anyhow, take your time working through the whole process, and above all else, be patient and forgiving with yourself. The more you delve into it, the more likely your perspective will evolve, and that growth indicates tenacity and strength – goodness knows my WHOLE perspective has flipped on its end (more than once) since my initial diagnosis 14 years ago, and, I’d like to think, I’m still developing, growing, and improving therein.
Thanks so much for your response, Erin!
Amanda
Jenelle,
Thank you so much for posting this article, I would like to share it but somehow feel like that would “blow my cover”, I contracted Herpes in 2011 and am still not sure how but it was very shocking news. I remember my only thought was, “how could this happen to me? I’m not a whore…” I didn’t know hardly anything about the disease when I was diagnosed and I was relieved to find out that it isn’t as serious or “dirty” as people make it out to be. The hardest part about having it isn’t even the outbreaks or having to take medicine twice a day to prevent them but the constant voice in your head saying “if people knew, what would they think of me”. We shouldn’t have to be afraid of the stigma though, it is a very common disease that actually has quite mild symptoms compared to many other STD’s, I just wish more people realized that just because it isn’t deadly doesn’t mean it’s ok to make fun of it. When you’re standing in a crowd and someone makes a herpes joke you feel like everyone can tell that your laugh is fake and they know because you instantly got uncomfortable, but remember they don’t know unless you want them too and that’s a perfect time to say “hey, you know 1 in 6 has herpes which means statistically one of us in this group has it so maybe you shouldn’t make fun of it.”
Jenelle Marie
Hi Amanda –
Yes, I totally agree, the jokes are horrible, and they make so many people feel not only uncomfortable, but utterly rotten. If people really knew and understood how many were affected, they wouldn’t make fun of it as much. The trouble is the ignorance – folks are completely unaware and uneducated about STDs, and some of it isn’t their fault, I suppose. Our educational system, the media, and a number of other things perpetuate the misconceptions.
I suppose that’s why The STI Project exists! 🙂
Anyhow, I really appreciated your message. Thanks so much for commenting.
PimpThe478
I saw a program on youtube made by a doctor about Herpes awareness. He stated that he could not understand why people put such a negative spin to genital herpes whether it be (HSV1 or HSV2) because both can affect the genital area.
He stated that common conditions like having high cholesterol and high blood pressure are much more dangerous but they aren’t stigmatized as much.He stated that in reality HSV2 the virus normally more associated with genital herpes has much bigger stigma attached to it than anything it would really ever cause an otherwise healthy adult.It’s not to say that people should throw caution to the wind and have unprotected sex with a person who is known to have genital herpes.It’s just that genital herpes for most people would be a very mild irritation or no irritation at all or they would asymptomatic.This is the reason why that approximately 80-90% of persons who have it would never even know they carry the virus because they exhibit very mild or no symptoms whatsoever. The most serious complication of this virus is in mothers who experience herpes outbreaks during pregnancy(in rare occasions) their children can either be born with mental defects or dead.Also in person’s who have outbreaks bursting the fluid filled bumps and touching your eyes (again on rare occasions) can lead to blindness.