Unpacking a Bag Full of STI Stigma
Feeling awful about having contracted a sexually transmitted infection? Here's the nitty-gritty on the stigmatization of STIs and people with them and how to deal.
fairies asks:
I’m 20 and have been with my partner for about two and a half years. We have a great relationship and are happy together. However, two years ago, when we first started sleeping together, I contracted genital herpes, even though we used condoms. I was a virgin before I slept with him so I knew it had come from him. I was angry and upset but he kept telling me he had tested clean at his last STI check and couldn’t understand that he must have it. When we went to the GUM clinic (together) they confirmed that I had herpes but told me that they don’t test for herpes unless there are symptoms present. Therefore when my boyfriend had his previous check-up (symptom free) he tested clean for everything they test for and then went on to sleep with me. My boyfriend was upset that I was blaming him and was tested again for everything they test for to prove to me he wasn’t lying when he told me he was clean. He was negative for everything they tested him for….except like last time, they didn’t test for Herpes and told him they didn’t test for it unless there were symptoms, which there wasn’t. He says he doesn’t remember ever having symptoms hence why he’s never had a physical check for it. I KNOW I didn’t do anything wrong, and neither did my boyfriend, but I feel so bad about myself. I feel like I should have done something before we slept together, but I don’t know what. I asked him to make sure he was clean: he did. We had no idea that they didn’t do standard tests for herpes.
How do I stop feeling dirty and like I was irresponsible?
Heather Corinna replies:
Fairies’ question continued:
99% of the time I don’t feel bothered about it. But recently I had my first flare-up since I was infected two years ago and I feel so embarrassed that I let myself contract it. Worse, I row with my boyfriend about it because I feel like he wants to deny he gave it to me or that I even have it. I think he’s embarrassed and he always tells me that he didn’t know and he had all his checkups and doesn’t understand how he had had it without realizing. He also doesn’t seem to get why they don’t test for it, he keeps saying that he tested clean in his checkups and I keep getting mad and trying to explain that there isn’t a standard test they do so unless he had symptoms they wouldn’t have tested him for it.
Please help. I love my boyfriend very much and I hate feeling guilty about contracting herpes because my decision to have sex was something I really thought hard about and took all the precautions I thought were needed (we were even using condoms despite me being on the pill, though I now know you can contract herpes through skin-to-skin contact after sex). The nurses at the GUM clinic were wonderful and kept telling me I shouldn’t feel guilty and that I took all the precautions I could, but I still feel awful.
I don’t think you or your boyfriend are dirty. I think you’re people who have one of the most common infections in the world, an infection that’s usually pretty harmless to most people, even though you feel ashamed about it right now and understandably upset, both about contracting the infection and about how your boyfriend has been reacting.
For most people, honestly, having herpes is pretty equivalent to having chronic acne: it can be painful with any outbreaks, but is mostly a cosmetic issue that’s unlikely to impact your physical health, even though it can certainly can take a toll on your mental health and how you feel and can be treated by others socially. I also don’t think you have been irresponsible. You both engaged in safer sex, including testing and latex barrier use, well and within the level of access you had from your healthcare services.
I want to make sure you know that illness, of any kind, is rarely about people being “dirty.” Even when you use the word “clean” here, that supports that idea. It’s such a pity that language is so often used when people test/are negative for things, a term I’d suggest you swap out “clean” for. People without certain infections or diseases aren’t automatically “clean” — they’re just people who don’t have certain infections and diseases, or who, in tests, have had negative results when tested for them. How clean or not someone is has nothing to do with this, just like how “dirty” someone is or isn’t.
Sure, if we get a wound and don’t tend to it properly, it will tend to get infected because of bacteria, and would have been less likely to if we cleaned the wound and kept it clean. As well, some kinds of illness are impacted by hygiene: in a real way, by how clean we, parts of our bodies or things we take into our bodies have or have not been, in the free-of-bacteria sense. For example, that can be a factor in urinary tract, E. coli and staph infections. Herpes (HSV), however, isn’t a kind of infections where hygiene is a factor.
The idea that sexually transmitted illness, specifically, is about anyone being “dirty” is really about ignorance, misinformation and social stigma, not about science or medical facts. Very unfortunately, and quite maddeningly, we have a long cultural history of stigma around STIs being cultivated primarily out of the desire for social control. In other words, the idea that scaring people about sexually transmitted illness, or shaming people about it, will make it more likely for them to only have the kinds of sex, or sex in the kinds of contexts or relationships, other people want them to have because of their own personal beliefs, which they feel are superior to different beliefs others may have.
One of the reasons we know HIV became so epidemic is that for years (and sometimes still) after the infection came to light, it was publicized as “the gay disease,” a half-witted and homophopbic tag that resulted in far more people acquiring it than would have otherwise, which has an impact still, and which also played a negative part in how research was done to try and treat people with and prevent the further spread of HIV: that stigma made, and still makes all the wheels to help everyone turn much more slowly. Still today, stigma with HIV — based on both it so often being sexually transmitted and on myths it only can happen to certain people — results in more people acquiring the infection, less people knowing how to prevent it and being supported in prevention, limited access to healthcare and in the funding for developing better care for HIV-positive people. Similar harm has been done when other groups in history — unmarried working-class women and people of color, for instance — were stigmatized about sexually transmitted illness. It’s safe to say that stigma placed on STIs has, in a lot of ways, done just as much harm or more to people as the infections themselves have.
And ultimately, the idea that STIs are about anything dirty is about the fact that some people think that because they think of sex — or some kinds of sex, some ways of having it, or having it with certain kinds of partners or relationship models — as dirty. In other words, you were doing something which, in their minds, was “dirty” and thus, getting an illness through that activity proves that “dirtiness.” It’s flawed logic and much of it is based on shame about sex and things that just aren’t true, but which people really wish were (like the idea that not being gay means you’ll be safer, or that being married, all by itself, means people won’t get STIs), but it’s the heart of where this framing of sexually transmitted illness comes from.
I don’t think sex is dirty (messy, sometimes, sure, but not dirty). I don’t think illness is dirty. And I don’t think you’re dirty. You’re a person who has engaged in sexual behavior the vast majority of people around the world and through history have, and in doing that, you acquired up an infectious disease, one of many — some sexually acquired, some in other ways — in our world people get and pass along just by being in close contact with each other, be that sexual or not sexual at all. Herpes, like other infections, is an illness. It’s not a judgment from on high, a kind of mark on or of your character, and it doesn’t have a thing to do with what kind of person you are or how much people who transmit illness between one another do or don’t care about each other, especially when everyone involved did all they knew to do to prevent transmission, like i seems clear you both did here.
I thought you might appreciate some perspective on this from someone who knows a whole lot about infectious disease, but who doesn’t share my politics or my job. So, I asked my mother. That’s less random than it sounds: my mother is the longtime, big-shot manager of infectious disease and control at one of the largest children’s hospitals in the United States.
I told her about your question, and she said a few things I thought we really spot-on that might give you some comfort.
She agreed with me that stigmatizing sexually transmitted infections arises primarily out of stigmatizing sex and certain people and out of ignorance and attempts to socially control people. She also agreed with me that stigmatizing sexually transmitted illness, or any kind of illness, does people real harm, both in terms of making them feel crappy, like you do and like it sounds like your boyfriend does, but also in terms of how it impacts public health. In other words, she agreed that stigma on sexually transmitted illness makes people sick. After all, it’s this stigma, more than anything else, that keeps people from getting tested, keeps people from talking about sexual health and making responsible choices like you did and impacts things like how accessible testing and treatment for STIs is to people around the world.
She also mentioned that some infections classed as sexually transmitted, and which often are, but aren’t only transmitted that way — like Herpes, HIV or hepatitis — are often transmitted from mother-to-child. Yet, we do not often hear people say that that kind of transmission or relationship is about anyone being dirty. She also brought up allergies. She said allergies are about a foreign antigen being introduced to our bodies, and us having a reaction to it, the exact same thing that happens with a virus like Herpes. And yet, we don’t hear people saying things people are allergic to like pollen, peanut butter, grass, strawberries or cute little kittens are nasty or dirty, nor that people with allergies are dirty. She went on a bit after that, bringing up what I often do that infectious disease is infectious disease: because some kinds are associated with or transmitted by sex doesn’t mean people who have or get them are any more “dirty” than people with other kinds of infectious disease, like who get the flu, a cold or chicken pox (which is a varicella-zoster virus like Herpes is).
My Mom and I also talked about how STI testing, when tests for all STIs are actually done (bearing in mind we’re still without a means to test men for HPV), can be very accurate, but are not infallible. In other words, tests are more often right than not, but not always. We also don’t have all the best technology for testing yet, and all tests aren’t available to all people, based on things like our income or our particular national healthcare system and its policies.
We can say similar things about other parts of safer sex. Latex barriers used properly and consistently for all oral, vaginal and/or anal sex do an excellent job of reducing the risks of STIs, but they only reduce the risks: they don’t make those risks go away. So long as we have the kinds of contact, sexual or otherwise, where we can transmit or acquire infections or diseases, there is always going to be some risk of them, even when we do all we can to reduce those risks. And with an infection like Herpes, unless you live your whole life in a plastic bubble, it’s virtually impossible not to be exposed to it at least a few times in life, because it is so, so common and so easy to transmit or acquire.
It sounds to me like you did all you could do here, save choosing not to ever have sex at all. You used barriers. You asked about testing and insisted your partner be tested. You partner also did his part, too: he went and asked for STI testing and the clinic gave him the tests they thought he needed. These are things you probably already know you’ll want to keep doing through your life.
One thing for both of you to know is that the policy that clinic system had isn’t unusual, especially in healthcare systems where the patient isn’t paying for the tests themselves. Testing for HSV can be tricky, as it is, because it’s so common that almost everyone has been exposed, even though everyone doesn’t have Herpes. Testing for Herpes is much more accurate when someone has an outbreak, which is one reason why most providers don’t test for it otherwise. While there are some common blood tests for HSV, the most reliable kinds of testing for HSV without outbreaks are costly and are not widely available, so you’re not likely to see them used much, especially in public healthcare. It’s not uncommon for a doctor or clinic not to use the most widely available blood tests for HSV because that kind of testing is known to often be unreliable.
It also is an infection which, for most people, doesn’t usually present big health risks, just like, for most people, chicken pox doesn’t. Save for some specific populations with certain health conditions, like pregnant people, those with suppressed immune systems or those at high risk of HIV infection (which I assume you’d have mentioned were these things currently issues for you), Herpes typically isn’t a major public health concern, nor an infection a healthcare provider will usually need to be concerned will create health issues for an average patient. To boot, it’s not something we have treatment for, beyond medications to help suppress outbreaks: in other words, unlike an infection like Chlamydia, there’s no medication we can take to make the Herpes virus go away. So, even when someone has it, there’s nothing a healthcare provider can usually do, save providing a medication to reduce the symptoms of HSV if a patient wants to do that. The only advice they’d give someone they knew had it to protect partners would be mostly about what you already knew and do: to use barriers for any oral, vaginal and/or anal sex. Additionally, they’d advise that when someone feels an outbreak coming on or has one, they avoid intimate contact, but that wouldn’t have helped your boyfriend any here since he didn’t experience an outbreak or notice if he had one.
So, those are all some of the reasons why, unless someone asks specifically for a Herpes test (or a full panel for all STIs, rather than leaving it up to the healthcare provider to decide what tests to run), that test often won’t be done. In the future, you can both make sure that with STI testing you always ask for a full panel, but you still may not get it when you do in healthcare systems where you’re not actually paying for all of those tests yourselves, or when a provider feels a test just isn’t warranted or won’t give reliable results.
It might also help you both to know that most people with most STIs, including Herpes, don’t have obvious symptoms, and with Herpes specifically, only around 75% of people at a maximum ever see or recognize symptoms to know they have it. In the UK, around 25% of your population who has had any kind of genital sex has HSV-2. To be clear about the information you took away on acquiring it, even with condom use, the deal is that because Herpes isn’t just transmitted by fluids, but also by skin contact, and condoms don’t cover all of genital surfaces, it can still be acquired/transmitted when using condoms. All infections can, but condoms provide more protection (around 10% to over 20% more) with infections spread only by fluids, unlike infections like Herpes and HPV. So, this isn’t just about contact after sex, but during any kind of sex.
Both of you really did do all you could do here. No one can ever have complete control over acquiring or transmitting all kinds of illness or not, including sexually transmitted illnesses. Medical science also has its limits, even for the rare individuals who have access to absolutely anything and everything in terms of tests and care.
One thing I think would make you feel a lot better, since this seems to be a major part of your question, is if you and your partner could come to some kind of resolution about this. It’s very clear you feel like he’s avoiding responsibility, and I can certainly see why you feel that way. It seems likely he doesn’t feel good about this either; that he feels as pissed and embarrassed about getting the virus as you do, and probably just as upset about feeling like this should have been something you two could have controlled. In other words, he seems to be feeling a lot like you are, he’s just dealing with it and communicating about it in a way that’s probably making you both feel worse. Too, he may have his own additional feelings about this that are different and distinct from yours that are having an impact on the way he’s feeling and behaving.
What I’d suggest is making clear to him that you don’t want to fight about this. I’d add — and if you’ve done this already a bunch of times, figure you make it clear one last time — that you know he didn’t do you any harm on purpose, and know, understand and believe that he thought he really had done all he could when it came to his testing, and that when it comes to possible limitations of your healthcare system, he may well have done so. In other words, that even if he had asked for a test, he probably would not have gotten one, and even if he got one, it may not have provided accurate results, so this still could have happened.
But then what you add is that you know all of that, but you feel like you’re alone in this and really don’t want to be, both because you’re not, and because it makes you feel worse about everything. You’re not looking to blame him: you’re looking for him to share responsibility so you don’t have to be the only one feeling responsible, especially since you’re not. You can tell him what you want and need is just for him to be with you in this so it’s something you both deal with together, especially since it is about both of you. You might even ask him to talk more about his feelings, maybe bringing up that he might have his own difficult and complex feelings about how he picked it up himself (if he knows), and feelings of guilt for inadvertently passing it on to you, and offering to listen to him and support him in those feelings.
Another helpful move might be for both of you to go back to that GUM clinic once more and ask one of those awesome nurses to talk with you two about all of this. They can fill you both in more about all the questions you each have and the things your boyfriend doesn’t seem to be getting or accepting, and may even be able to give you some help in dealing with this well as a couple. I’ll leave you some links for more information on HSV, but if either of you still have any lingering questions about this as a healthcare issue, it’s always wise to ask your healthcare provider directly.
You might also want to check in with yourself and make sure this relationship is still working for you and is really as awesome as it has been in the past. If this is the only area where you two are having the kind of emotional dynamics you have been, and everything else is great and feels great, then you can probably work this out. But if he’s doing things like avoiding responsibility for other things, or not being supportive of you in other ways, it may be time to make sure this is really about Herpes and not about bigger things.
One last thing you might need to unpack that might part of how you feel are ideas people will often have that genitals need to be somehow perfect. In other words, that they always need to look awesome, whether that’s having whatever someone feels is the “right” amount of hair, the “right” size of penis or labia, the “right” smell or color. People can feel that way about bodies as a whole, too. But bodies and all their parts, including genitals, aren’t perfect: they’re human, just like us. Sometimes we’re going to have zits or ingrown hairs. Sometimes our genitals are going to smell funky or look weird. And sometimes, just like with any other part of our bodies, we’re going to have an illness or health condition that’s going to impact how our genitals look, smell, taste or feel and how we feel about them. If and when we’re already not at the point in our lives where we’re pretty comfy with our genitals as a whole, having something noticeably wrong with them can be even tougher. So, I’d suggest checking out your feelings about this stuff, too, and trying to adjust your thinking — something your boyfriend might also need to do — to accept that it’s always okay when bodies, or genitals, aren’t “perfect.” We get to be sick sometimes. We get to be imperfect, and even if we don’t feel like that’s okay or allowed, we’re going to be imperfect in many ways no matter what we do or who we are, whether we get ill or not, so if we don’t get pretty okay with that, it’s going to be hard to feel good no matter what. In other words, if some of how you feel is about being physically “imperfect” now? Welcome to the club: it’s one everyone is a part of even when they don’t think they’re a member.
I hope that at least some of what I said here will help you feel better, but it still might take some time to absorb all of it and also to accept it all, both for you and your partner. Just shrugging off things that are socially stigmatized, even when we know that that stigma is based on things that aren’t sound is rarely something anyone can just do and be done with all zippy-like. It tends to take time. It’s also tough to have any kind of illness or change to our bodies, especially when we know that change is in some way permanent, even when we know it’s common and not going to kill us. If you’ve never had any experiences dealing with ongoing illness before this, that alone tends to be its own process. Humanity and mortality are hardly minor issues to grapple with, after all.
Here are those extra links on this site about herpes and safer sex (seeing that you were doing all you could in another context might help you feel better), a couple that might help you and your partner work through stuff in your relationship, and I’m also passing along a good support site specifically for folks in the UK with genital herpes you might find helpful.