Living with herpes
Written by Irene. L
Photo by Seans.JPG
I don't know how to start this, so I'm just going to start. Hi, my name is Irene and as cliché as it may sound, I contracted genital herpes on my year of studying abroad in Australia. What happens in Australia stays in Australia right? Wrong. Turns out in the land down under about 12% of the population has genital herpes, or HSV-2, with a prevalence amongst women. Due to the stigma surrounding the virus, people with genital herpes often find it hard to tell potential sexual partners about it as having an honest, intimate, and raw conversation with a person you've just met can be quite challenging.
While I was in Australia I didn't quite clock that this would be a problem as I was in a committed monogamous relationship, but when I moved back to the UK to continue my studies the reality of my condition hit me and I started to PANIC. How could I approach talking about a subject I so desperately wanted to bury, repress, forget? How could I muster the courage to tell a stranger about something that is always presented as a deal-breaker? What would they think? Would they judge me?
I felt as gloomy as the weather outside and desperately combed the web for resources on living with herpes and tips on how to tell potential sexual partners, but all I could find were 'medical' websites like planned parenthood suggesting suppressive therapy with heavy medications like acyclovir and wearing two condoms for double protection.
What I desperately wanted was an honest, helpful and especially hopeful account of living with herpes, so now- three years later, I am attempting to write the article I wish I had found at the time. For increased readability I shall divide the piece into four sections touching upon some of the most 'turbulent' aspects of having genital herpes: stigma, casual sex, sex in a relationship and herpes triggers.
Stigma:
As I've hinted, the worst part about having genital herpes is not the virus itself. In fact, after your first year is up, outbreaks begin diminishing significantly and become less and less painful. I've had HSV-2 for over three years now and while my initial outbreaks were so painful I couldn't bare to cross my legs while sitting at my desk, today I hardly notice I'm having one- which can be dangerous for potential parters- but I'll get to that later. No, the worst part is not the virus. The worst part is the judgment, stigma, and shame that come with the virus.
For women especially, the discovery of having HSV-2 can be particularly distressing as popular culture associates it with being sexually promiscuous: women with herpes are seen as 'slutty' or 'dirty' or both. Sadly, not only does the patriarchal society we live in shame women for having and wanting sex, but it frequently shames them for the number of sexual partners they've had in the past. I'm sure many of you are familiar with the saying: a key that opens many locks is a very good key, but a lock that opens for any key is a faulty lock.
Or that a man who sleeps with multiple women is a 'player' while a woman who sleeps with multiple partners is 'easy'. This confining vision of the world makes it increasingly hard for women with herpes as they are often blamed by society for having contracted the virus due to their 'promiscuous' behaviour, and are seen as having 'brought this on themselves' due to their slutty carelessness. Indeed, women are often slut and STI shamed by the very doctors diagnosing them: instead of receiving helpful and calming information, these encounters lead women with HSV-2 to end up blaming themselves and believing that they truly are dirty slags.
But guess what- herpes doesn't mean you're a slag, and it doesn't mean you're dirty either. Herpes is a skin disease, like psoriasis or a rash. Nobody stigmatises people with oral herpes, so why should genital herpes be any different? Where did this stigma come from? Why should I feel ashamed about having a sporadic skin disease?
Prior to the 1970's there was no stigma surrounding any form of herpes, however the American pharmaceutical company Burroughs Wellcome launched an aggressive marketing campaign with the aim of increasing the company's profits. The campaign focused on the ways a newly developed medication- acyclovir, could reduce transmission rate and minimise the number of outbreaks per year, targeting genital herpes in particular. The company used fear tactics and public humiliation to increase sales, condemning a relatively benign disease in the public imaginary.
Today's pervasive social stigma surrounding genital herpes may be traced to this marketing campaign and the successive media storm that ensued. The interplay of media generating fear and anxious consumers responding to the increasingly sensationalistic articles and TV ads successfully made people feel ashamed to have and talk about herpes. (If you are interested in reading more on the subject I suggest the following article on Slate.
So HSV-2 is not a branding iron with the word 'unworthy' on it, unless we believe Burroughs and Wellcome's ad campaign. It is a condition which is mildly annoying, but fortunately very manageable. As I began to realise this, I started to see the stigma surrounding the virus as part of the unequal power structures that encroach everything in our society. It comes as no surprise that this stigma is stronger for women due to the 'key and lock' way of thinking which is dominant in our patriarchal society.
Having casual sex:
Of course, its very easy to get over the stigma with yourself in the safety of your own psyche, however it is a completely different story when you need to tell someone- especially for the first time- that you have genital herpes. It is not always necessary to tell everyone you have sex with, however as a general rule I like to inform people I believe I would like to have sex with more than once. If you meet someone in a club or at a festival (wishful thinking at this point in time) and have sex knowing you most likely will never see them again, then just wear a condom and get on with it.
But if you might like to see this person again- maybe they are a friend, maybe a potential fuck- buddy, or maybe just someone you would like to have casual sex with more than once to see where it goes, then I strongly advise being open about it as soon as possible. Talking about herpes is hard because it touches upon themes which are usually explored further down the line, surely not on the first, second, or third encounter. Issues such as trust, shame, fear of being inadequate or not enough are usually confronted after you have gone through a certain amount of bonding experiences ranging from intimate talks, to increasingly great sex, and especially the knowledge and discovery of one another's vulnerabilities, triggers, and shortcomings.
Being open about herpes forces you to address many of these things with people who are still almost strangers, imposing intimacy by involving them in a raw and open conversation without the faintest idea of how they will react. This can be fearfully paralysing, but on the other side of fear is a wonderful possibility: what if they react nicely? What if this intimidating conversation turns into a bonding experience with which you can skip through the small talk straight to the important stuff? What if this ends up drawing you closer together? You might learn something intimate about the other person in return and this may lead to deeper levels of connection.
Anxiety can play a strong part in not wanting to share this information with new sexual partners and people often tell themselves that they will surely be rejected. In my experience people tend to be a lot more understanding than we give them credit for, however the experience of 'coming out' can be nerve-wracking and to help with this
I can offer three solid bits of advice:
Practice telling people who honestly will not care about you having herpes:
Tell the friendly girl waiting in line for the bathroom, tell the ladies in your yoga class you see once a week and who don't even know your last name, tell your male friends you don't want to have sex with now or never. Crack jokes about it to strangers and mention it to people you will never see again. This will help 'normalise' herpes for you: rather than it being a big dark secret, it will become a boring part of your everyday life, and when the time comes to tell someone meaningful about it you will have thicker skin than before. Also, who knows, one day you might be faced with the answer 'me too!' and start a truly interesting conversation with an almost stranger.
When to tell:
Eventually you will want to breach the subject with a potential sexual partner and I believe that when you tell them is almost equally important to how you tell them. Generally it is a bad idea to mention it straight before you have sex or straight after sex, but at the same time it is also not ideal to dump this information on them immediately just to get it out of the way. The perfect time would be somewhere in-between. If you are dating this person, or already know them I would suggest to tell them after a bonding experience.
The first person I told about herpes after getting back from Australia was a boy from my university I quite liked, and wanted to have sex with. We were both learning how to skateboard and decided to go to a skatepark together for the first time- a pretty nerve- wracking experience in itself to wobble on our boards in front of all those pro's kick-flipping about. When we left the skatepark we felt elated and bonded as we had just undergone an intimidating experience together. I decided this was the perfect time to discuss the fact that I had genital herpes and invited him back to mine for tea, biscuits and a confessional chat. It went amazingly- I cried a little, he comforted me and we later had amazing sex. If you do not know the person at all yet, and don't have time to wait around for the perfect movie moment, you can always fall back on a good old dose of flattery. Whatever you may be talking about, sooner or later they will share a fairly intimate anecdote about their own lives and at that point you can jump in and say 'I have something to tell you and I'm sure a mature, mindful, and understanding person like you will take this well'. Or something along those lines.
How to tell:
Once you have found the right moment, having a list of bullet points to touch upon can really make this part easier. I know my 'confession' letter off by heart now, but it really helped me to write out what I was going to say initially.
The first and most important point to remember is this: a person receives information in the same tone you deliver it in, so if you approach the subject in an anxious, sad and blameworthy way, the recipient will be alarmed. They may not know much on the subject and if you deliver your message as if having herpes is the end of the world, your audience will end up thinking it is the end of the world. However, if you approach it in a lighthearted but serious way, the outcome will be quite different. So remember to smile, breathe and relate your points clearly and succinctly.
The second most important point is that herpes is a skin disease and is contagious when there is a visible sore on your skin. Many doctors speak about asymptomatic shedding, claiming you could pass herpes on at any time and stating that unprotected sex and sleeping together naked is unsafe. However, if this were true people with oral herpes would never be able to kiss anyone ever again as they could theoretically be shedding asymptomatically at any time.
In my three years of experience with unprotected sex in long term relationships with herpes I have never once infected a partner and struggle with the legitimacy of claims about asymptomatic shedding, but I will cover this in more depth in the next section and suggest that everyone do their own research. For now remember:
Point one: explain how you personally contracted the virus giving as many or as little details as you feel comfortable with to give your listener some context. Be as calm and serene as possible as this will set the tone for how this information is received.
Point two: explain that herpes is a skin disease with decreasing levels of contagiousness- during the first year it is at it's highest levels of contagion and decreases year after year, the same goes for frequency and intensity of outbreaks. You may want to carry out your own research surrounding asymptomatic shedding, and mention that herpes is only contagious when an open sore is present on the genital area.
Point three: share some pertinent facts about herpes you believe your partner might like to know about, like what tends to trigger your outbreaks or how the virus can be spread only via skin to skin contact but not through the use of shared soap bars, towels etc. as the virus dies very quickly outside of the body.
I have yet to be rejected by someone for having genital herpes, but in the unlikely case this should occur try not to be too demoralised: it says more about their character than the fact that you have a skin disease! Remember that it is better to discover sooner rather than the other person feels this way than to be involved in an untruthful exchange. On the other hand, casual sex partners that are accepting of genital herpes display a certain degree of empathy, respect, and maturity: a number of desirable qualities in the sort of sexual partner you, or anyone, deserves.
Having sex in a relationship:
Herpes does not just affect your casual sex life, but it has a large impact on sex in long-term relationships also. In particular, three aspects seemed to fundamentally change: firstly, I was haunted by the thought of using condoms as protection in a monogamous relationship, secondly sex was now scary due to the fear of infecting a loved one and third, how should one navigate sex during an outbreak?
When I discovered I had genital herpes my first thoughts were: I will never be able to have unprotected sex again. Of course, I am not advocating for unprotected casual sex as it is what got me in this situation in the first place, however the thought of wearing a condom in a monogamous long-term relationship preoccupied me deeply.
If you enter a relationship with someone who has HSV-2 on some level you are accepting of the fact that you may or may not eventually contract the virus yourself, nonetheless as the infectious party I was determined that this should not be the case. But the more I read online the more worried I became. The World Health Organisation writes: 'herpes infections (both oral and genital) are most contagious when symptoms are present but can still be transmitted to others in the absence of symptoms'. This meant that I could potentially be contagious at any moment and would have to have condom sex my entire life.
For many people this may not be a problem, but personally I have never liked condoms for a number of reasons. Luckily for me my first sexual partner after returning from Australia- the one I told about herpes after publicly humiliating ourselves at the Canary Wharf skate-park, had an even greater hatred for condoms than I did. After informing himself about the risks of contagion and getting tested to certify that we were both STD free (other than my herpes of course), we began having unprotected sex. Skateboard boy was totally unconcerned with the possibility of contracting herpes and seemed dubious about asymptomatic shedding: he had lived with oral herpes for years and never infected any partners. He refrained from kissing and oral sex during outbreaks, but that was about it. So, we embarked on a year long relationship having unprotected sex and I did not at any point infect him with HSV-2.
Thanks to our shared hatred for condoms and his courage, we discovered that similarly to cold sores, genital herpes was apparently only infectuous during outbreaks, which leads me to my next point: fear of passing herpes to a partner if you both consent to unprotected sex in a relationship. Disclaimer: I am not one of those lucky people who only has one outbreak per year- quite the contrary I have fairly frequent flare-ups. Because intensity of outbreaks deceases over time, you must be very responsible, careful and sensitive to symptoms and potential warning signs to avoid infecting your partner. In the first year it is almost impossible not to notice as the blisters tend to be quite large and painful, however as time passes pain morphs into mild discomfort and eventually into an itchy feeling with smaller and smaller sores.
The clearest indication of an impending herpes outbreak is a tingling in the area, general fatigue and unusual white discharge. These symptoms can sometimes be confused for a common case of thrush, but as a responsible herpes bearer it is up to you to err on the side of caution and refrain from sex until you have identified whether you are having a flare-up or not.
If you are having an outbreak, it is recommended to abstain from sex altogether until it has cleared up- even with a condom which does not provide total protection from HSV-2! Depending on the severity of the outbreak, you may need to refrain from sex for up to 10 days which sounds horrible, but can actually open the door for new ways to connect.
The first few flare-ups can be particularly painful, so you may want to abstain from any form of sexual play when these occur and engage in other kinds of activities instead. Pampering of any sort is highly suggested: massages, close talks, baths, date nights, preparing a particularly tasty and complex meal to enjoy together, meditation, game nights and any fun activity you can think of can help heighten you and your partner's mood.
On the other hand, if your outbreaks are no longer painful but just mildly annoying, then there are several ways to enjoy yourself with your partner without skin to skin contact. My personal favourite is masturbating together. Using sex toys like vibrators makes it safe for me to touch myself during a flare-up without spreading the virus around other parts of my body and it can be very exciting to face each other, dirty talking and fantasising about what we would do if we could touch each other. Anal is also an option, and you can always perform oral sex on your partner while you place toys inside yourself as you pleasure them.
These are my personal favourites, but each couple is different and can use herpes outbreaks as a unique chance to try out new things: either through abstinence and non sexual connection or by engaging in unusual forms of play which can stimulate your sex life in unexpected ways.
Herpes triggers:
The final theme I would like to explore is the mystery of herpes triggers and what I have learned from mine. HSV-2 outbreak causes are different for everyone and are quite mysterious- days, months and even years can pass between one outbreak and the next. It is up to each herpes bearer to investigate his or her own triggers in order to gain a deeper awareness of what the virus may be trying to tell them.
It is important to understand what our triggers are so that we can become more mindful of them and avoid causing ourselves unnecessary pain. If we understand the mechanisms that draw the virus out of our nerve endings where it lays dormant most of the time, then we can stay away from them in the future. When I first discovered I had HSV-2 I combed the web to find out more about the virus and it's general triggers, which ranged from hormonal changes before menstruation, to excessive sunlight, fatigue or a weakened immune system. However, I firmly believe that anyone who has herpes is able to dig deeper and find more personal causes for their outbreaks. During the first year of contagion my flare-ups seemed to come out of nowhere, and this is probably true as I had only been infected recently and my body had to familiarise itself with the virus. But as time went on it became increasingly obvious that I was provoking my successive outbreaks through my behaviour.
I know this may sound far fetched, and that some people may be appalled at the idea that they themselves are the main cause for their flare-ups, but hear me out. My outbreaks are deeply connected to my uncontrollable rage, something I have struggled with all my life. Each time I have an outbreak I know exactly why I am having it: when I am unable to manage my anger I promptly get a tingling feeling and know that the next morning I will wake up with herpes.
I am not talking about a minor fight with your sister about who stole who's top, or a quarrel with your boyfriend about who's turn it is to do the dishes. I mean a full blown, red in the face, breaking things, shouting match that can be so intense you forget what you've said soon after because you were utterly consumed with emotion and rage. It took me a while to notice the correlation between herpes and anger, but when I did things started to change.
The situation did not improve immediately. Initially, when I could feel myself getting angrier and angrier a little voice in my head would try and warn me: 'careful, don't exaggerate or you know what will happen' but I would consistently ignore it. But later, after the shouting was done and I was crying on my bed in my room alone, I would secretly regret my excesses. As I could feel the familiar tingling sensation I would cry harder knowing that I would be 'punished' for my reckless and irresponsible outbursts.
Of course, I am not claiming that everyone who has herpes has uncontrolled anger issues, but they surely have some sort of tension going on between their psyche and daily life which explodes in the form of herpes sores. Maybe they are being too emotionally involved in something. Maybe they are extremely tied to their sense of duty and give too much. Maybe they are under pressure and tired, but rather than putting their outbreaks down to stress they should ask themselves: what is stressing me out? Why do I feel obliged to do so much? Which part of myself needs room to breathe? Why am I so angry? What emotions am I not expressing correctly?
As time went on I became more and more skilful at calming my rage before the point of no return, and today my outbreaks are truly sporadic. By looking more loosely at the triggers behind my flare- ups I learned a lot about myself and finally understood something which was long overdue. Rather than ignoring the fact that I have anger issues as I usually had, herpes forced me to take charge of this shadow side of my character and address it head on. At the end of the day HSV-2 was able to teach me something about myself I had systematically and stubbornly ignored for years. And once I got the message it helped me to diminish my physical outbreaks and improve my emotional outbursts also.
In Italian we say: non tutti i mali vengono per nuocere, or not all evils come to harm us, and if we are able to look past our shame, frustration and sadness about having herpes and try to understand what it is trying to teach us, then maybe we can unexpectedly draw something positive from this experience.
Irene is an academic writer and journalist currently based in Rome. She publishes environmental articles for Lampoon Magazine and specialises in inequalities, food-security and the protection of marine ecosystems.