I have wanted to write about herpes for quite some time and it has taken me even longer to get the courage to do so. I have read article after article of individuals who write about their life living with herpes and thought that was amazing. Yet, I always found something lacking, something missing. These articles spoke of personal experiences, and while they were courageous and relatable to most living with herpes, they mainly focused on their individual stories and how this could potentially apply to everyone. This gave me an idea; why not get the stories of the silent majority? The one’s who want to have their stories told and their voices heard but aren’t yet ready to put themselves in the spotlight to be ridiculed and, ultimately, outed to the world.
I decided to create a small survey and distribute it among the herpes positive communities. In total, I received 125 responses. I wish it were possible to share every single person’s story but that would turn this article into a book. As I went through and read everyone’s answers, I wrote down general trends I noticed and highlighted specific quotes I felt were noteworthy. The following are the questions I asked:
-
Current age?
-
How do you identify? (male, female, other)
-
At what age were you diagnosed?
-
What type of herpes do you have and where?
-
How has this affected your current relationship/dating life?
-
How long did it take you to fully accept and come to terms with having herpes?
-
How has it affected your daily life?
-
What was your biggest concern when you found out you had herpes?
-
Which is worse for you: the social stigma or the physical symptoms?
-
How do you believe the age at which you contracted the virus played a role in all of this?
-
If there is one thing you wanted the world to know about herpes/living with herpes what would that be?
-
Optional question: How many sexual partners did you have by the time you were diagnosed?
I had responses from people who had been diagnosed as young as 14 to as old as 65. I had begun this thinking I might find some kind of trend between age and dealing with herpes but I never did. I did discover, however, that, in general, most people who were diagnosed at around 30 and above were glad they were not diagnosed earlier as they were happy they were able to enjoy their sexual freedom. They believed they would not have been mature enough to handle it had they been diagnosed earlier. A few people even claimed they might have committed suicide had they been diagnosed younger.
“I read stories of people who got diagnosed after their first sexual encounter and I think that would’ve been a lot harder for me than already having had sex with multiple people. Even after I got diagnosed I was really self-blamey and apologized to myself for not taking care of my body and not always using protection (clearly I wasn’t super informed about it when I found out). So I think being a *little* bit older helped because I already had some coping skills in place.” (24, female)
While people who were diagnosed in their 20s seemed glad they weren’t diagnosed in their teens. Others who were diagnosed around 30 and under had one of two sentiments: they either felt they were deprived of their sexual freedom or they were glad they were diagnosed so young as it helped them mature faster.
“I’m very bitter about not having gotten to explore sexually as much as I wanted.” (29, female)
Dating was a huge concern for almost everyone. Those that were not currently in a relationship feared they may never be in one again.
“You think twice now before you even start to like a person you think wait but what if they aren’t gonna be accepting of the fact that I have this for the rest of my life, because some people aren’t okay with this and look at it as “you’re nasty”’ (19, female)
Some stopped dating completely.
“I don’t date anymore. I try to avoid situations where I could potentially develop feelings for someone, because I fear that rejection.” (21, female)
“I don’t want to date, unless it’s very convenient. Dread the talk! Feeling much less perfect, than I did. I ask God for peace and guidance, most every day.” (58, male)
It has also caused others to become insecure and feel as if they have to settle because they honestly believe no one else would want them.
“It’s led to a lot of insecurity about my body and my sexual confidence within my current relationship (same person I was dating when I was diagnosed) and has led to the question of whether I’m staying in my current relationship because I’m afraid of the potential judgement in dating circles” (20, female)
“I feel like I have to settle for someone. For example I’ve tolerated men who didn’t treat me well, such as borderline verbal abuse.” (47, female)
On the opposite side of the spectrum, there were many people who stated that herpes has made them pickier in who they look for in a partner and it has helped them weed out the people who don’t truly care about them.
“It has helped me weed through people. I have found that those who matter have no problem accepting it. It has made me much safer in my sex life & much more confident!” (26, female)
“It made me pickier with who I even consider casually dating. At first I wanted to settle for being with the terrible guy I’m pretty sure I got herpes from, but after coming to terms with my diagnosis I realized there is absolutely no reason to settle for anything less than I deserve. I have not had any rejections (so far) and have had multiple sexual partners (some long term and a few one night states)” (24, female)
Along with being in a relationship, another big concern was having children. Most who filled out my questionnaire have learned since first being diagnosed that giving birth to kids is 100% possible! Just make sure to keep your gyno informed about your herpes from the start! And especially if you ever have an outbreak or even think you may be having one. If you are having an outbreak during birth, they may decide to give you a C-section.
In response to my question about how herpes has affected your daily life, I was pleasantly (not so) surprised to find that it did not affect most people’s day to day lives. Many people had similar responses to this young woman.
“It really hasn’t affected my life that much. I have the “is this an outbreak or ingrown hair?” situation occasionally but for the most part it doesn’t affect a single thing about my daily life.” (24, female)
“Surprised it didn’t happen sooner with the way it’s been transmitted, and with the large number of people in denial about the cold sores being a virus that added to it.” (50, male)
Herpes is so incredibly manageable that for most people, once they have gotten over the initial shock of finding out they have it, it won’t even cross their mind on a daily basis. And when I asked whether the social stigma or physical symptoms were worse, almost everyone said social stigma. The few who said physical symptoms were generally people in long term committed relationships so the social stigma didn’t matter to them. It was the occasional outbreak that was more annoying to them.
For the majority that believe the social stigma is worse I am going to let their quotes speak for themselves.
“Definitely the social stigma. The physical symptoms go away, the stigma does not.” (21, female)
“The social stigma is fucking terrible, it’s exponentially worse than the physical symptoms and I get really frustrated by the immense lack of education that’s happening, at least where I grew up, about what herpes is. The first thing I thought of when I got diagnosed was a sex-ed class in high school where they showed us pictures of herpes sores going up peoples’ backs and our teacher telling us that herpes is “definitely not the one you want” because there’s no cure for it.“ (24, female)
“The social stigma by far. I’ve literally only had one genital outbreak and I have had herpes for a year. It seems ridiculous to me that someone might reject me over something so minor.” (22, female)
“Social stigma 100%. I’m asymptomatic. It really fucks with my head sometimes because I feel like I’ve got nothing but society says I’m walking around with this disease. I wish I would have an outbreak so I’d know what everyone’s so afraid of.” (29, female)
“My first outbreak was horrible and excruciating. I needed Percocet to go to the bathroom, it hurt to sneeze or cough and had me bed ridden for a few days. But since then (7 yrs), it’s the social stigma that has been the worse. The fear and anxiety and shame that I feel when someone cracks a herpes joke is the worst” (34, female)
“Social stigma and how that then beats down your self esteem. You can deal with a pimple like area, it’s the things that people actually say to you. That you should kill yourself, no one will ever want you. Your gross, who would want to even touch you.” (50, female)
“I love myself with and without my herpes. I just wish that others felt the same way. The social stigma is literally the hardest part of having this disease. And I’d hope and pray that one day herpes can be labeled as simply as eczema or heat rash.”(24, female)
“Social Stigma! you never really notice how many people joke around about herpes and having herpes until you have them yourself. Before being diagnosed I hoped I’d never be diagnosed with it because I didn’t want to be looked at like I had a major disease and feel that no one would want to be around me. Now that I’ve been diagnosed, people who joke around about getting herpes piss me off beyond belief. You hear people joke and you just want to tell them that it’s not that big of a deal and reassure them. It’s like when I had just found out and was getting used to the idea of telling potential partners. I remember telling my best friend who I used to like in high school. We were about to have sex and I told him and he freaked out but he kept saying ” I can’t believe you out of all people have herpes.. I just, I can’t believe it. Sorry, but no I don’t want that.” It hurt. But people don’t understand that it’s really just a skin condition that pisses you off when it wants to be an asshole and make you have an OB (outbreak). It doesn’t define me in the slightest, but the stigma makes you think that it does and/or should.” (22, female)
These are just a few of the responses I chose to put in here that I felt best portrayed the vast majority of all respondents’ sentiments. As I said previously, if I put every single wonderful yet painfully truthful response that I read in here I would have a novel.
The following are a few of the best quotes in response to what they wanted the world to know about herpes:
“That just because you have hsv doesn’t make you a bad person it is just a virus that wants to live with you and not kill you.” (34, female)
“Don’t be afraid there are many facts and treatment options for you to help prevent transmission we all can live normal lives” (23, male)
“That it can happen to anyone. I’ve met people who have had hsv since they were 2 years old from kissing family members. It’s transferred by skin contact so you can get it from oral sex and you can get it even if you use condoms religiously. Having H doesn’t mean you’re dirty. It can happen to anyone and it just takes one time.” (26, female)
“It’s really not as bad as it seems. There’s nothing “gross” about it. You can contract herpes EVEN IF YOU’RE HAVING PROTECTED SEX. Having herpes does not make a woman a ‘slut’. Having sex with someone who has herpes is not a favor. We are still beautiful human beings. You can contract herpes whether you’ve had one partner, or 20.” (21, female)
“First, it’s so incredibly common that the big deal being made out of getting herpes or having herpes is insane. Big Pharma scared you to make money and now the people who are living with herpes are paying the price by dealing with the ridiculous stigma. People who have herpes, or any STI, are worthy of love, acceptance and do not have ruined sex lives. By working on changing our opinions of herpes and teaching about all STIs more (and what to do when you get diagnosed with one), instead of using them as some dreadful scare tactic that makes people too afraid to get diagnosed or tell their partners about it, we can probably help to stop STIs from spreading as easily. STIs are incredibly manageable and if proper precautions are taken, they are less likely to be spread to sexual partners (even without condoms). It’s when people are too afraid to disclose or too afraid to get tested when something isn’t right that STIs are able to spread without people knowing.” (24, female)
“That we are not covered in oozing sores on our genitals every day! Some actually think that. That cold sores ARE herpes and even if you do not have an active outbreak, you can transmit the virus to the genitals via oral sex. That until they themselves have been properly tested, they do not know their status. That when you ask the Dr. to test you for everything, you are NOT being tested for this. If every single person was tested for this, it would show how prevalent it is and therefore, just like chicken pox, we would NOT have to deal with the stigma that we do. So instead ones who deal with outbreaks are stigmatized and ones who never have been tested are completely ignorant and it them makes us in the minority.” (50, female)
“That YOU don’t change just because your STI status does. I’m still the same girl, but now I take better care of myself and those around me never judged me. Life goes on I promise” (24, female)
“Herpes does not define who you are as a person. It is not as bad as so many people think it is. Yes, society wants you to believe that it is the worst thing a person could ever contract, but there are much worse things out there. Do your research before you judge someone with herpes. But most of all, herpes is not a “Death sentence. It’s just a pain in the ass when you have an OB, but as long as you know how to treat it and you’re responsible for others you want to be sexually involved with, you’ll always be okay” (22, female)
“People literally get suicidal after they get diagnosed. That is so FUCKED UP and it’s because everyone is so dumb about herpes. The fact that someone gets some sores on literally the last place anyone would ever want sores to show up ~*occasionally*~ and then because of how everyone else is so dumb about it makes people want to KILL THEMSELVES?! Come on society. Grow up. Do better.” (24, female)
For my final question I asked them if there was anything else they wanted me to include in this article so here are a few things they requested.
-
There are two types of herpes. Hsv1 and hsv2. Type 1 is typically located orally and type 2 is typically located genitally but it is very common for type 2 to be oral and type 1 to be genital as well.
-
80-90% of people have hsv1 and 1 in 6 people have hsv2. So it is extremely common!
-
Cold sores ARE, in fact, herpes. They are usually type 1, but can be type 2 as well. I have heard people make the argument that we need to stop counting people who get cold sores in the stats when we say somewhere around 90% of the population has herpes. But news flash, you can give someone genital herpes via your cold sores through oral sex! Outbreaks on your face are just as much herpes as outbreaks on your genitals.
-
Herpes is NOT included in most standard STD panels. That means when you go to the doctor and say okay, I want to be tested for everything! And you get back a 100% negative panel, herpes is usually not included in this as per CDC regulations (http://www.cdc.gov/std/herpes/screening.htm). Some doctors may include it, but do not assume this! Always make sure to ask to be tested for herpes. The reason the CDC states this and most doctors won’t test you for herpes is because they know that the psychological effects almost always outweigh the physical pain. (However, by not including it in regular STD panels they are also helping perpetuate this stigma surrounding hsv)
-
The most common symptom of herpes is NO SYMPTOMS. This is another reason why herpes is so common! 80% of people who have herpes have no idea they are hsv positive. Even when you do get an outbreak, it can look like so many other things (especially for women) such as razor burn, ingrown hairs, a yeast infection and so on.
-
If you believe you may have come into contact with herpes, you need to wait three months to be tested unless you are having a visible outbreak. Getting tested before this may result in a false negative because your body has not yet built up the antibodies that they look for in a blood test. If you have visible symptoms, however, they can swab those, which is the most accurate form of testing for herpes.
-
If you think getting herpes only happens to ‘stupid, dirty’ people who don’t have safe sex, you might want to think again. Condoms do NOT 100% protect you from herpes. They certainly help reduce the risk quit a lot, but they don’t give you full coverage. This is because herpes is spread through skin to skin contact and not through fluids. So no, you cannot get herpes from a toilet seat. Although it is possible for the virus to live on a surface, it is only for about 10 seconds, and that is in the right conditions. Exposure to air greatly reduces that time span. And if you are one of those proactive people who make sure you and your partner get tested before you have sex, then good for you! But please refer to #4.
-
Many doctors are not as well informed on herpes as you would like to believe. In many people’s responses they talked about how when they were diagnosed their doctors simply gave them a pamphlet and shooed them out of their office. In my experience, when I was diagnosed I had so many questions and my doctor could not answer a single one. Similar to others, she gave me a pamphlet and a badly photocopied article on dealing with the psychological effects (which was not helpful in the least). I have had people tell me stories of going into the doctor’s office and literally having to explain to them that yes, hsv1 can be transmitted to your genitals. I also remember once telling a nurse this, as I have genital hsv1, and she looked at me like I was stupid and questioned me, saying hsv1 was the oral kind.
-
Having herpes does not make someone a degenerate, a slut, dirty, unlovable, less attractive, or immoral. Contracting herpes makes you human, it makes you normal. It’s a game of chance every time you have sex, even in a committed relationship as many people don’t know their status and people do cheat. I was surprised by just how many people who responded to my questionnaire contracted herpes with their very first partner. And let’s not forget those who contracted this virus via rape. Statistically, yes, you are more likely to contract an STI the more people you sleep with. However, herpes does not care about statistics. Herpes doesn’t care if you’ve had zero partners or 100 partners.
-
If you are diagnosed with herpes, you are not alone and it is not the end of your life, and especially not the end of your sex life. It saddened me greatly to know that a good handful of these people felt as if they could never date again or as if they must stay in relationships simply because they feel trapped. My words of advice to those who feel this way are please, do not ever stay in a relationship because you feel like you can’t get anyone else or because you don’t deserve better. This is a tactic that abusers try to use to keep their partners in the relationship. They will remind them how lucky they are to have someone who ‘accepts’ them and that they won’t find anyone else who will. But this is simply not true! You deserve to be treated like the kings and queens that you are. You deserve a healthy and happy relationship (if a relationship is something you want) just like everybody else. And if you want to be sexually free, don’t feel held back! There were more people than not who noted that they were successful in one night stands and casual hookups after disclosing.
-
As one of my respondents said “Remember the words of Robert Frost, ‘In three words I can sum up everything I’ve learned about life: it goes on’.” This is very true, and if you ever feel lost, or you would like to know where to find support you can find me at http://herpessupport.tumblr.com/