Unpacking a Bag Full of STI Stigma


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.

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Follow Heather Corinna on twitter: @Scarleteen

  • prochoiceferret

    Heather, I agree that no STI should be stigmatized as more than what it is, and there’s little to gain by not accentuating the positive with this writer. But I think you’ve put too rosy a view on what is a common, and yet emotionally costly, incurable viral infection.

     

    There is no vaccine nor cure for herpes, standard barrier methods do not protect [fully] against it, and it can be transmitted even when the infected partner is asymptomatic. In my mind, the boyfriend’s clinic was negligent in not having informed him that they were not testing for HSV. It’s fair to say that accurate tests for it are expensive, so if he wasn’t paying out of pocket for the test, they could leave it out. But giving out information is a lot cheaper than lab work, and the lack of it here led almost directly to another infection and needless emotional distress.

     

    Saying that herpes merely makes genitals “imperfect” borders on flippancy. Hair where you don’t want it is an imperfection. A funny-looking bend or fold is an imperfection. Painful sores that prevent you from having genital sex when you want it, and add a whole ‘nuther level of complexity in seeking it from a partner who is not infected, is a lot more than an imperfection.

     

    I hate the fact that there are entire dating sites (some of which will probably be spammed here) built on the premise of being infected with HSV, almost as much as I hate why there is a need for them. Unless you put a detail like that up front from the get-go, it’s all too often a deal-breaker.

     

    I can understand that you don’t want to paint a bleak picture for someone who’s already infected—and it breaks my heart that there’s currently little we can do for them medically—but I think you’re minimizing it to an extent that is less than beneficial. (This goes double for the column you did a while ago, with the girl who kissed her boyfriend and then noticed that “his lips looked gross,” not least since he didn’t have the excuse of ignorance.) Herpes is not chickenpox, and presenting it as though it were comparable is, IMO, a disservice.

     

    There’s already enough lack of awareness of HSV, and how it doesn’t follow the “rules” of most STIs (i.e. use a condom and you’re pretty well protected, and if not, a round of antibiotics will take care of it, etc.). With so many people practically sleepwalking into positive status, the last thing I want to see is anything that may cause people to believe that if they do get infected, it’s not such a big deal. (To wit, we’ve already seen how AIDS transmission rates have reacted to the widespread availability of anti-retrovirals and other medications to manage it.)

     

    For my part, I count myself lucky to be uninfected, and am very keen on avoiding the virus. I never want my conception of how great and awesome sex is to be tainted by a persistent and troublesome [even if harmless] infection, let alone figure out how I would approach new partners with that bombshell disclosure.

  • veryconcerned

    Dear Heather,

    I believe you’ve written a very comprehensive, thoughtful and compassionate article on this subject.  And I’m sure you provided some much needed comfort to the young woman who wrote you.  However, despite this, your minimization of the herpes virus (“it’s not a major public health concern”, “it doesn’t usually present big health risks,”) is a big part of the problem and is precisely the reason why 1) clinics are not testing for it; and 2) there is inadequate funding to research and find a cure. 

     

    Your minimizations are also a reason why people who suffer from it are unable to receive genuine empathy for what they’re going through: people (usually well-intentioned health providers) are so busy trying to convince the infected person that what they have isn’t really a problem (“it’s just like having a cold!”), that no one bothers to take the time to simply empathize with the person, and the fact that, for that person, it really IS a problem — a problem that will cause emotional and physical pain and discomfort for the rest of their lives; that will change their sense of their selves and their identity as a human and sexual being; place powerful limitations on their social and relational behavior; and for some, possibly worsen over time as they are confronted with issues of reinfection at other sites in or on the body.

     

    Moreover, the mantra “millions of other people also have it”, in my opinion, is also not comforting.  It’s an attempt to normalize an infectious virus that simply should not be normalized: cold viruses – unlike herpes viruses – don’t cause blindness, or encephalitis, threaten your unborn children (for example, with possible cleft palates), or place you at further risk for contracting other viruses like HIV.  I wish people would stop normalizing this virus as a means of comforting the infected.  Your normalizing is what makes it easy for researchers and funders to ignore its existence, and for people to continue suffering. 

     

    Finally, your minimizations only serve to marginalize the painful experiences of those for whom the virus is highly problematic.  Articles like yours that emphasize ”Hey, it’s really not a problem for most people!” basically make those for whom it IS a serious problem INVISIBLE.  People are not inclined to see the people who are really suffering from herpes, or empathize with them, because they’re constantly receiving the message that there is no problem, and that, after all, there’s really nothing to see here.  Please stop this.  You’re not helping anything.  You’re just leaving people with the illusion that all is well, while pushing others further into a corner filled with silence and shame.

     

    P.S#1 You could have mentioned that there are blood tests for both HSV1 and HSV2.

     

    P.S.#2 Where did you get the idea that HSV is not transmitted by fluids, and solely by skin?  I believe this is a potentially irresponsible statement, as I have evidence that suggests otherwise.

  • saltyc

    If you actually do put the stigma aside, what is the suck that is worse than chickenpox which you didn’t address?

    But giving out information is a lot cheaper than lab work, and the lack of it here led almost directly to another infection and needless emotional distress.

    Led to another infection, meaning he had sex with her. Because she would not have had sex with him if she had known? What if she knew and had sex anyway, it would still have led to another infection right? So saying what a terrible thing another infection is, is saying it’s terrible he had sex, right?

    I hate the fact that there are entire dating sites (some of which will probably be spammed here) built on the premise of being infected with HSV, almost as much as I hate why there is a need for them. Unless you put a detail like that up front from the get-go, it’s all too often a deal-breaker.

    Painful sores that prevent you from having genital sex when you want it, and add a whole ‘nuther level of complexity in seeking it from a partner who is not infected

    So OK painful sores, but really the worst part is the stigma and the not being able to have sex, right? Exactly why is herpes worse than chickenpox? Because of how we socially deal with it. And the social part is worse and quite real.

     

    I count myself lucky to be uninfected, and am very keen on avoiding the virus. I never want my conception of how great and awesome sex is to be tainted by a persistent and troublesome [even if harmless] infection,

     

    How do you know you’re uninfected? Did you have the more expensive test that is done on asymptomatic people? Or is it an assumtion based on no symptoms? I ask because I have spoken to many people who assume this but weren’t actually tested for herpes and you can’t say it if you weren’t.

     

    I lived with a man for three years and had lots of sex with him. I learned from his longtime friend, after we had broken up, that he had herpes . This friend was upset when I said he never told me. But I was not upset in the least. Because, when the worst part of a disease is the social stigma, when the worst part of a disease is that you can’t have sex, that it

    taints your perception of how great and awesome sex is

    ,when talking about it is likely to bring out the worst parts of a disease, then it is rational not to mention it.

     

    It’s funny that I had had discussions with this man while we dated, about disease, where he took the position that people who spread diseases are guilty and I took the more liberal position, that blaming infected people is counter-productive to disease containment. There’s some psychological reason for his hardline position I see now.

     

    But if your conception of sex being awesome and great can be tainted by a non lethal skin eruption which happens rarely, what is sex supposed to be for those people who knowingly have herpes? Are they not supposed to think of sex that way? What about all the other consequences of sex, doesn’t abortion taint the greatness and awesomeness of sex?

    Sex is great and awesome and there is herpes, and there is abortion, and there are all kinds of non-awesome things with it, even for those who have herpes and abortion, and birth control complications, etc.

     

    Again, is it irrational, with the stigma that there is now, with the over-reaction, and such, that infected people not tell even people they’re having sex with? I’d like more insight into this that doesn’t further stigmatize infected people, shunt them to leper-colony-like dating sites or cause people who don’t even know to proudly proclaim they’re uninfected. 

    Look at this scenario: A man knows he’s infected, and a woman who is infected but asymptomatic, are soul mates, would make each other totally happy and make life so much better for each other. Then the night comes, the perfect night, and they’re gonna do it. Before they do, he tells her he has herpes. She decides, after much soul-searching and moral wrestling, that she doesn’t want her concept of the awesomeness of sex tainted or have to deal with the social stigma, not to mention skin lesions, that it’s not worth the risk. They break up and end up not meeting anyone interesting or having sex for three years. How sad, especially considering that she actually had herpes, just didn’t know it. And the reason he didn’t have sex for three years is that she accidentally told someone why she dumped him and it got around, so that a lot of other asymptomatic women wouldn’t even date him, and a few symptomatic ones also didn’t because they didn’t want others to know. This happens all the time and is I daresay more tragic than rarely occasional pimples on your nu-nu.

  • prochoiceferret

    If you actually do put the stigma aside, what is the suck that is worse than chickenpox which you failed to address?

     

    When chickenpox hits you, it hits you hard, but then it never hits you again. (Well, okay, it can flare up again and cause nerve damage later in life if/when the immune system is weakened, but by and large, it’s not an issue for most people.)

     

    Could you imagine how much more sucktastic chickenpox would be if it recurred again and again throughout one’s life after the initial infection? Do you remember how bad it itched?

     

    Led to another infection, meaning he had sex with her. Because she would not have had sex with him if she had known? What if she knew and had sex anyway, it would still have led to another infection right? So saying what a terrible thing another infection is, is saying it’s terrible he had sex, right?

     

    It’s not terrible that he/they had sex; it’s terrible that they had sex without being aware of his infected status. Had they known, they might have decided not to have PIV sex, or make use of a drug that reduces the transmission rate (forgot the name), or engage in sexual behaviors less likely to transmit the virus. Or even knowingly take a chance with PIV sex, hoping the virus wouldn’t make the hop given the absence of sores.

     

    It’s the same argument with HIV testing: “Know Your Status.” And everything that comes from that.

     

    So OK painful sores, but really the worst part is the stigma and the not being able to have sex, right? Exactly why is herpes worse than chickenpox? Because of how we socially deal with it. And the social part is worse and quite real.

     

    One-time, versus recurring. And while I agree that the stigma is harmful, even if you completely get rid of that, you’re still going to have uninfected persons making a risk calculation prior to genital sex with an infected partner. Lack of stigma does not imply indifference to transmission.

     

    How do you know you’re uninfected? Did you have the more expensive test that is done on asymptomatic people? Or is it an assumtion based on no symptoms? I ask because I have spoken to many people who assume this but weren’t actually tested for herpes and you can’t say it if you weren’t.

     

    I have had the test done, on more than one occasion and with sufficient incubation time beforehand, and I specifically asked for the HSV-1 and -2 tests.

     

    I lived with a man for three years and had lots of sex with him. I learned from his longtime friend, after we had broken up, that he had herpes . This friend was upset when I said he never told me. But I was not upset in the least. Because, when the worst part of a disease is the social stigma, when the worst part of a disease is that you can’t have sex, that it

    taints your perception of how great and awesome sex is

    ,when talking about it is likely to bring out the worst parts of a disease, then it is rational not to mention it.

     

    You’ve made a choice not to concern yourself greatly with the risk of transmission. That’s great. Some people choose to have lots of sex with different partners (such that testing every one isn’t feasible), others choose to have few, long-term partners. Nothing wrong with either approach.

     

    What is wrong, however, is when the infection is transmitted because one or both of the partners are ignorant of the risk of that happening.

     

    I want an HSV vaccine more than anything, so that this entire issue can go away. But short of that, it’s something that people need to know about, and discuss with their partners. I don’t support criminal penalties for transmitting the infection, nor anything less than the elimination of the stigma surrounding herpes. But I do support an interpersonal protocol of dealing with it similar to that developed for HIV, and have little patience for the line of thought that this shouldn’t be the case merely because HIV/AIDS is potentially fatal and HSV isn’t.

     

    It’s funny that I had had discussions with this man while we dated, about disease, where he took the position that people who spread diseases are guilty and I took the more liberal position, that blaming infected people is counter-productive to disease containment. There’s some psychological reason for his hardline position I see now.

     

    There’s a difference between assigning blame, and assigning responsibility. There’s little to gain by demonizing/stigmatizing people who are infected. Empowering people to know their status, and have the fortitude to discuss it with a new sexual partner, is a lot more productive.

     

    But if your conception of sex being awesome and great can be tainted by a non lethal skin eruption which happens rarely, what is sex supposed to be for those people who knowingly have herpes? Are they not supposed to think of sex that way? What about all the other consequences of sex, doesn’t abortion taint the greatness and awesomeness of sex?

     

    Different people have different experiences. I know that if I contracted herpes because my partner just assumed uninfected status due to a lack of sores, that would be very bad for me. On the other hand, for a couple who have both had HSV1 since childhood, it may be yet another shared point of their humanity (along with that bottle of lysine).

     

    Sex is great and awesome and there is herpes, and there is abortion, and there are all kinds of non-awesome things with it, even for those who have herpes and abortion, and birth control complications, etc.

     

    Yes. All things we do in life have risk, but it’s far better when society has its ducks in a row enough so that we can choose how much risk we want to open ourselves up to.

     

    Again, is it irrational, with the stigma that there is now, with the over-reaction, and such, that infected people not tell even people they’re having sex with? I’d like more insight into this that doesn’t further stigmatize infected people, shunt them to leper-colony-like dating sites or cause people who don’t even know to proudly proclaim they’re uninfected.

     

    Yes, the stigma does not help. Heather addressed that better than I ever could. I only take issue with saying that contracting herpes isn’t a big deal. And I’m sorry that my disclosure of where I was coming from in this argument struck you as a “proud proclamation,” because I am striving to make this argument without denigrating the infected status. Is it easy? No. But after everything I’ve posted on this site, do you really believe I’m approaching this from a pro-stigma, sex-negative angle?

     

    Look at this scenario: A man knows he’s infected, and a woman who is infected but asymptomatic … This happens all the time and is I daresay more tragic than rarely occasional pimples on your nu-nu.

     

    My basic worldview is that ignorance is not bliss. (By the way, “occasional pimples” is HPV, not HSV.)

     

    IMO, the man should have disclosed his status well before “the perfect night” (it’s important to be able to talk about sex without the heat and pressure of the moment fogging things up), the woman should have gotten tested, and the stigma should not have mucked things up. In my alternate ending, the two realize that they’re both infected prior to having sex, they decide to go ahead and celebrate that perfect night, and they sail off into the sunset as soul mates.

     

    And I’ll be very happy that they’ve managed to find true love. Even in spite of that damned virus.

  • prochoiceferret

    Completely apart from the discussion of how big a deal herpes is, I have a question I’d like to present to those here who know better:

     

    Given that HSV can be transmitted via skin-to-skin contact—most notably, skin that isn’t covered by a condom—wouldn’t a potential solution be to use a “larger” condom?

     

    Imagine that you had a “condom” that was basically a pair of latex boyshorts, with a sheath for the penis, all a single piece. Both partners liberally lubricate their pelvic areas, the male dons this prophylactic, applies even more lube, and then they go at it. So you have a latex barrier not only around the penis, but between the full area of their respective groins.

     

    Would this be a feasible way to reduce HSV transmission?

  • veryconcerned

    ProChoice Ferret:  For some people, the prophylactic you suggest may be the only way to reduce the risk 100%.  Any time there is any area that’s not covered, there’s a risk that the virus will be transmitted.

     

    Heather: How could I have missed these glaring minimizations in your introduction:

     

    “I think you’re people who have one of the most common infections in the world, an infection that is usually harmless to most people… For most people, honestly, having herpes is pretty equivalent to having acne: it can be painful with any outbreaks, but is mostly a cosmetic issue that’s very unlikely to impact your overall health.”

     

    Acne?  Really?  Does acne cause a fraction of what herpes can cause? Cosmetic?  Wow.  That’s one of the biggest understatements of the year.

     

    Further clarification about what I meant by “genuine empathy”:  Meaning, stop denying the seriousness of the subject for a moment to hear the person exactly where they are, instead of trying to talk them out of their pain.  Stopping for a moment to just say:

     

    “Faeries, that must have been really hard for you to have saved your body for a special someone at such a special moment, and taken every possible precaution that you could, only to find yourself infected with an incurable disease.  I can’t imagine how hard that must have been for you, or what you must have felt as you noticed something changing in your body over a period of days…maybe burning, or tingling…then finally swelling and sores.  That must have been terrible to have had sex for the very first time, only to see your body react like this.  And it must have been, and still be, even harder for you because you trusted your body and yourself with someone, and can’t help but feel betrayed.”

     

    Have you stopped to realize what a trauma this whole thing must have been for Faeries?  When you understand that it was traumatic, do you realize what you’re doing when you minimize it?

  • prochoiceferret

    for you to have saved your body for a special someone at such a special moment

     

    Veryconcerned, please don’t read more into the writer’s situation than she described. She may have only one sex partner in her life, but that doesn’t necessarily mean that she “saved her body” or that he is the “special someone” she ultimately wants.

     

    I don’t know what your background is, as I’ve never seen you post here before, but this kind of presumption—as well as your lack of affirmation for the desire to have sex and its indulgement with appropriate precaution and knowledge—makes me suspect you’re not approaching this from the perspective of “sex is good, infection and stigma are bad.”

  • saltyc

    When chickenpox hits you, it hits you hard, but then it never hits you again. (Well, okay, it can flare up again and cause nerve damage later in life if/when the immune system is weakened, but by and large, it’s not an issue for most people.)

    Could you imagine how much more sucktastic chickenpox would be if it recurred again and again throughout one’s life after the initial infection? Do you remember how bad it itched?

    But again it doesn’t hit nearly you as hard, (right? I don’t know) also, isn’t rickets when chickenpox returns? I also heard chickenpox virus also stayed with you in a dormant way until your immune system gets weak. I’m not a doctor of course.

     

    It’s not terrible that he/they had sex; it’s terrible that they had sex without being aware of his infected status. Had they known, they might have decided not to have PIV sex, or make use of a drug that reduces the transmission rate (forgot the name), or engage in sexual behaviors less likely to transmit the virus. Or even knowingly take a chance with PIV sex, hoping the virus wouldn’t make the hop given the absence of sores.

    I wondered why not include the possibility that they could have known his status and had sex knowing that she would eventually become infected. Is that an ethical choice, knowingly becoming infected therefore becoming another host for the virus? I ask this sincerely.

     

    Also, since you did get the special test that finds positive results in non-symptomatic people, did you have to pay it yourself? I would assume that insurance does not cover it. This is also a sincere question.

     

    Also because you had to say it, I don’t for a second think you would be coming at this from a sex-negative postition and I do prefer your alternative ending to my sadly more common scenario.

  • beenthere72

    Maybe you’re thinking of shingles?  I have shingles.  It rears it’s ugly head when I’m severely stressed out in the form of a break out of blisters and scabs on my forehead.   It starts with painfully intense headaches and I know it’s coming.   I hate it.  

  • prochoiceferret

    But again it doesn’t hit nearly you as hard, (right? I don’t know) also, isn’t rickets when chickenpox returns? I also heard chickenpox virus also stayed with you in a dormant way until your immune system gets weak. I’m not a doctor of course.

     

    Shingles is when the chickenpox virus (VZV) returns; rickets is when you don’t get enough vitamin D. I got chickenpox as a kid; you get angry red bumps all over your body that itch like mad even as your parents prevent you from scratching so that they don’t break open—yeah, it hits hard. I’m glad my memory of it is somewhat fuzzy.

     

    Broadly speaking, however, chickenpox is a one-time deal. People even thought of it as an expected event of childhood, at least until that vaccine became available in recent years. Even though the virus always stays with you, it remains dormant (immunocompromisation aside), and isn’t even contagious once you’ve recovered from it.

     

    If herpes were like that, then yeah, it would be [for me] an annoyance but ultimately no big deal. Even a sort of rite-of-passage, perhaps, at least for more promiscuous folks.

     

    I wondered why not include the possibility that they could have known his status and had sex knowing that she would eventually become infected. Is that an ethical choice, knowingly becoming infected therefore becoming another host for the virus? I ask this sincerely.

     

    If done knowingly, then I guess it could be, though I can’t imagine what the thought processes would be on that. I’ve heard of “bug chasers” who intentionally become infected with HIV, but I’m not sure if that’s something they do clear-headedly. It’s a perspective so foreign to me that I have little understanding of it.

     

    Also, since you did get the special test that finds positive results in non-symptomatic people, did you have to pay it yourself? I would assume that insurance does not cover it. This is also a sincere question.

     

    IIRC, my insurance covered it—but then, I have relatively good insurance through my employer. Obviously, there’s a class issue, as many don’t have that luxury, let alone spare out-of-pocket money to pay for such tests. Which makes the fact that the boyfriend’s clinic [allegedly] didn’t say a peep to him about what tests they weren’t doing such a wall-banger.

     

    Also because you had to say it, I don’t for a second think you would be coming at this from a sex-negative postition and I do prefer your alternative ending to my sadly more common scenario.

     

    Thank you for affording me good faith :-) This isn’t an easy argument to make, because it cuts so closely to the anti-sex right-wing concern trolling we’ve seen so often here and elsewhere, differing mainly in the all-important nuances—and even more so because Heather Corinna’s on the receiving end of it, someone whom I have great respect for and disagree with only on a very, very few points. This being the foremost one.

  • heather-corinna

    I’m in the middle of work travel, so only was able to look at the comments here briefly, and won’t be able to look at them again until later on Saturday. I will do that then, because I certainly don’t want to be hasty in responding to plenty of, IMO, totally valid comments and concerns, which I appreciate.

    In the meantime, just know I already heard back from this user who was very grateful for the response and appears to be feeling much better. As well, please rest assured I do check my medical info when I give it, and not just when I’m on the phone with an expert, as I was in this piece. Lastly, please know I never do advice column answers in any kind of hurry: usually, I answer them over the span of at least two days, giving them a good deal of time, thought and care.

    That said, again, don’t want to shortcut when people have invested their own valuable time and energy, so not going to try and get in-depth with this in an airport. I’ll poke my nose back into this when I’m back at my home office, have had some sleep, and have time to give my response to your comments justice.

  • cmarie

    It sounds to me like you gave good advice to each of the three young women Heather but you went way too easy on the boyfriends.  It sounds like in each case the young man knew he had herpes but failed to educate himself adequetly about how to avoid infecting a partner.  Those women have every right to be mad!  That’s not to say their relationships should end, but at the very least they deserve to see a phenomenal increase in responsible behavior (across the board) from each of the boyfriends.  If a woman is infected and begins a new relationship, I would argue it is her responsibility to educate herself to avoid infecting him.  In these cases the young men were infected first so it was up to each of them to educate themselves before becoming sexually active with anyone else.  What else have these guys “forgotten” to mention or mentioned and failed to educate themselves about? 

  • prochoiceferret

    Heather,

     

    Thank you for stopping by briefly while you had a moment. Please enjoy some rest, and I look forward to your comments!

  • heather-corinna

    cmarie: there was only one individual asking the question here, who had only one partner. And she made very clear that that partner did not know he had HSV and, based on having gone to a GUM clinic and asked to be STI tested, felt certain he did not have the virus.

     

    So, I don’t see her partner having been irresponsible when it came to how the HSV was transmitted to this individual. He disclosed he had previous partners, he got tested and believed himself to be free of STIs, he used barriers with her. There really isn’t anything else he could have done here.

     

    I also think we have to be really careful about how responsible we hold people for their own sexual education. Are we saying that before any kind of sex with a partner, every person needs to be sexually educated to a certain degree or else they’re being irresponsible? If so, to what degree? And how do we expect everyone to know what to even look up or where? When we’re talking sexuality and sexual health information, I think it’s vital we remember that for as responsible as we hold anyone for getting it, we have to hold those who are withholding it or aren’t providing it, or are, but substandardly, just as responsible, if not more so.

  • heather-corinna

    You know, for a little while there — if I recall right, around 2001 — there actually was such a thing, save they weren’t gender-specific, so there wasn’t any kind of sheath. They were more intended, I believe, for people sans penis as less fussy, fumbly protection during cunnilingus than a dam can be. I sampled and reviewed them myself and thought they were totally fantastic. And yes, with that much area covered, one would expect to see a much higher degree of protection from HSV and HPV than condoms or dams can provide.

    Alas, they were only around for a year or so, and I’m not sure why they came and went so fast. I was pretty bummer when I couldn’t get them again.

  • heather-corinna

    It’s not terrible that he/they had sex; it’s terrible that they had sex without being aware of his infected status. Had they known, they might have decided not to have PIV sex, or make use of a drug that reduces the transmission rate (forgot the name), or engage in sexual behaviors less likely to transmit the virus. Or even knowingly take a chance with PIV sex, hoping the virus wouldn’t make the hop given the absence of sores.

    I think the tricky thing for me around this is that you’re talking about one of the vrisues where testing is really quite iffy, especially when people don’t have access to the better tests.  You could ask for — and likely got because you could pesonally pay for — the tests you did, even though they were probably standards tests (which can have an error window of as much as 20%, which is awfully high).  They’re in the UK, using the NHS, where they don’t have that option.

     

    I agree with you: I want everyone to have all of these options and the education for them to know what they are.  I agree that not having all of that is very much not ideal and hopefuly, will be remedied.  I agree that ideally, everyone should be able to make 100% informed choices when it comes to sexual health risks.

     

    At the same time, I also have to deal with what the real deal is for folks not just our ideals, like the fact that I want there to be an HPV test for men, but we don’t have one.  I want everyone to be able to be tested for all STIs and for all of those tests to be very reliable.  But.

     

    Know what I mean?

     

     

     

     

  • heather-corinna

    veryconcerned: per this comment and your other comment, you’ll want to see the first set of comments I left to ProChoiceFerret, because they address a couple things you brought up here.As well, as I noted in that first comment, I made a couple small edits, including fixing a sentence where I unfortunately left out a “just” around fluid and skin transmission.  I appreciate you catching that.  I also addressed the issues with blood testing a teeny bit more, and provided a link from ASHA which should clear up some of why I said what I did around that.

    But I wanted to respond to a couple of things you said here my comments there didn’t address.

    I want to make sure you (and everyone) know this wasn’t any kind of FAQ or general article on HSV, for starters. It was an individualized response to one individual, one who gave me a lot of information to work with. To boot, it was from someone I know is already connected with, and has been, sexual healthcare services and information on the virus. So, I didn’t address things like the issues contracting HSV when pregnant, because since she didn’t mention being in that situation (and isn’t likely to transmit it to someone else who is pregnant), I felt it was safe to assume she was not. In terms of other information that is more general and less individual, that is why I left her the links at the end which I did.

     

    When we’re advice columnists, or doing any kind of direct service, to do our job well, it’s vital we focus on what the person we’re answering is actually asking and asking for.  I spoke most about stigma and interpersonal issues because that is primarily what she was asking me about.  I don’t beleive I made anyone with a different health history than hers invisible, both in what I wrote and in providing the other links I did.  Again, this was about her, not others, even though I did make clear that unlike the sounds of things for her HSV can present more serious issues for others.

     

    Personally, I don’t feel I minimized anything here, and again, I’m very sure the individual I was serving did not feel that way, as I got a very gracious thank you from her.  But, as I mentioned to ProChoiceFerret, by all means, I think it’s tricky and tough to figure out how to walk the line between providing comfort and reducing stigma and minimizing.  I don’t think I did it here, but I’m also not going to claim my self-assessment is corrent, nor that I do any of this perfectly.  I feel that the more and more years I do this, the better and better I get at walking those tightropes, and I’ve no doubt that as I do this work for more and more years, I’ll improve further.

     

    Lastly, I personally disagree that making clear that HSV and other illnesses common, and not dirty — which was the core issue being asked about and addressed here –  negatively impacts treatment and research.  Colleagues of mine in sexual health and sexual health ed specifically tend to share my philosophy there, because we talk about it all the time, though I respect that you do not agree.  I also do not think I silenced or shamed anyone.  It might help here, again, to also bear in mind that my personal perspective isn’t something I can ever be exempt from.  I have disabilities, including chronic illness, and I also grew up around illness literally every day of my life and in my work, continue to work with illness a lot: so, for someone like me, coming from where I am — as well as doing my best to address what was asked for this individual, rather than reaching far past it — illnesses ARE normal, and suggesting they are not when they are isn’t something I do tend to find at all helpful personally nor from a public health perspective.  Especially with a question like this, rather than a more broad and general piece on Herpes, like those I included in the links.

  • heather-corinna

    Thanks for waiting on me with this. I saw that a little bit down the page, in another comment, you said that this kind of critique wasn’t easy for you to make because of respect for me. I really appreciate you making it, however, and doing it the way that you did. Having a pretty good sense of you at this point, I know absolutely that you and I share the same kinds of goals and values around this: we want people to be as healthy and happy as they can be. I also very much agree with you that figuring out how to toe the line around these topics, especially when talking both about stigma and facts, is tricky as hell. I find it to be too, and I have no illusions that it’s not something I can’t always keep refining and improving on. Comments like yours really help me do that, so thank you.

     

    While I know from the user’s feedback that she absolutely got what she needed from this, I made a couple tiny edits less for her, and more for other readers. I think they’ll make some things more clear where clarity was part of the issue, and work a bit better for a general reader, rather than an individual who is being spoken to directly and very individually.

     

    To my understanding, the clinic wasn’t negligent. Doing standard blood tests for HSV is, to my understanding, very unusual to do when someone does not have and has never had an outbreak. remember, too, they’re in the UK and using the NHS, which makes a big difference in all of this. That said, it does sound to me like her partner’s provider, like so many, could have made clear what they do and don’t, can and cannot test for. And of course, the world in general could do better in providing this kind of education early, too, so a patient knows to ask and knows what to ask.

     

    I don’t feel I was flippant when talking about appearance and social issues, and know the user didn’t seem to think so, but I’m hoping the tiny edits I made around those things make my understanding that cosmetic issues can be a very big deal — IOW, that something being cosmetic and painful but not necessarily dangerous doesn’t mean it’s automatically no big whoop — more clear. Of course, I’m also coming from the perspective of a) knowing that even things like how healthy labia look are something that keep a lot of people from having sex when they want to and b) as someone with a couple disabilities that have prevented me from being able to do core things I want, including sex sometimes, so I’ve no doubt my own perspectives and experiences in that regard influenced my response. Even with talking about being imperfect, my perspective likely played a part here: I only have half of two fingers and to me, that’s an imperfection, even though it’s also been incredibly painful at times and has certainly been challenging to live with. So half a dominant hand that has limited function and looks pretty weird very visibly = imperfection like HSV outbreak = imperfection, if that helps give you a better picture of my own lens.

     

    I mentioned chickenpox because they are also a herpes virus, and did so in terms of addressing issues about feeling “dirty.” In other words, I gave that information to demonstrate how one of the same family of viruses is treated very differently in the world. Make sense?

     

    I’ll add some more to your other comments in a sec. Given there are so many comments here and my time is limited (especially since the person this was for I know already felt served well, which is my primary goal), I may not be as in-depth as I’d like to be. But I hope you know you can always email or PM me if you want to dig a little deeper. :)

  • heather-corinna

    No need for me to reply to veryconcerned w/this one, because ProChoiceFerret has said everything I’d say, to the letter. On the issue that you think I didn’t give the user the appropriate level of care and empathy, please see my other comments, including those where I make clear the user herself did not feel that way at all.

  • wendy-banks

    Shingles totaly suck– I had chicken pox as a kid, and have had three flares of shingles, very painful! The MD did not beleve me till she saw my lower back. The statment was “You are too young to get them, you are only 40. People don’t get them untill they are 60+.” I pulled down my pants and she gasped “You have shingles!” Really? No shit. Thankfully, my insurance payed for an anti-viral that cleared it much faster. As it was however, anyone that had not had chicken pox or Varcerela vaxcine could have caught the virus from me. 

  • prochoiceferret

    … and work a bit better for a general reader, rather than an individual who is being spoken to directly and very individually.

     

    That was part of what made the critique tricky for me. You wrote the reply for a young woman who already has the virus. There’s no way that fact can be helped, so it’s all about dealing with that, and how it’s not the end of the world. But this was also publicly posted, and there’s a whole ‘nuther audience out there that might take away the wrong message from it … It is a tightrope-walk. I can hardly raise the objections I did without being aware that this is already a very tall order for you.

     

    To my understanding, the clinic wasn’t negligent. Doing standard blood tests for HSV is, to my understanding, very unusual to do when someone does not have and has never had an outbreak.

     

    It wasn’t about not running the HSV tests (since hey, they’re expensive and money doesn’t grow on trees), but about not giving the boyfriend the information he needed to know. Fairies’ letter indicates that the clinic informed him that they weren’t running these tests, but I suspect he may have read that as “If you’ve never had an outbreak, then you don’t have the virus, so there’s no point in running these tests.”

     

    However they might have done it, at the end of the day, he should not have looked at his test results and said, “I am ‘clean,’” but instead said, “I am ‘clean’ of everything that they tested for,” and been aware of what the difference entailed. The way things played out, to paraphrase Donald Rumsfeld, the boyfriend (and Fairies in turn) got bitten by an “unknown unknown.”

     

    remember, too, they’re in the UK and using the NHS, which makes a big difference in all of this.

     

    And with David Cameron and the Tories running the show, the funding issues are only going to get worse.

     

    And of course, the world in general could do better in providing this kind of education early, too, so a patient knows to ask and knows what to ask.

     

    Agreed; this does place the clinic in the position of making up for a lack of proper sexual education in schools and families. (Granted, I don’t know how the sex-ed situation in the UK compares to that in the U.S.; I’m presuming the boyfriend’s situation indicates not all is well.) And that’s not a fair position to be in. But I don’t think that excuses them from informing patients of the implications of an STI test that they are administering.

     

    Of course, that in itself isn’t a walk in the park. If they have a staff member discuss the test and results with a patient, that’s a heavy personnel cost. If they hand out a photocopied information sheet, what if the patient can’t understand it? Or if it’s not in a recognizable language? Or if the patient is illiterate? All the complications of providing health care to a diverse population.

     

    knowing that even things like how healthy labia look are something that keep a lot of people from having sex when they want to

     

    True, but it’s much easier to problematize a person’s insistence on porn-perfect genitals than an unwillingness to contract a virus. We can say that a [gynephilic] person should overcome their aversion to real-world healthy labia in order to improve their odds of a healthy, happy sex life, but it’s not reasonable to tell that same person that they should overcome their aversion to infection with an incurable virus for the same reason.

     

    … as someone with a couple disabilities that have prevented me from being able to do core things I want, including sex sometimes, so I’ve no doubt my own perspectives and experiences in that regard influenced my response … So half a dominant hand that has limited function and looks pretty weird very visibly = imperfection like HSV outbreak = imperfection, if that helps give you a better picture of my own lens.

     

    It does; certainly “imperfection” can be applied to a broad spectrum of things-that-are-not-perfect. However, the term is still misleading—because with all the examples you gave, then and now, the imperfection is self-contained, inert but for its immediate impact and how people react to it, which is not true of an STI. Let me explain what I’m getting at:

     

    Presuming that it’s your right hand that you’ve described: You could shake hands with someone, and while it might feel a bit odd for them, and they may react in one way or another to that, that would pretty much be that. It would be a different story if your disability were caused by a microbe that can be transmitted by the act of shaking hands.

     

    It’s one thing to broaden our minds so that we can react with understanding and compassion when confronted with imperfections in other people’s bodies; that is indeed conducive to a healthy and happy society. It’s another thing, however, for us to be indifferent to taking on new “imperfections” without willingly choosing to do so for reasons that are important to us. (E.g. soul mates with one having HSV.)

     

    I mentioned chickenpox because they are also a herpes virus, and did so in terms of addressing issues about feeling “dirty.” In other words, I gave that information to demonstrate how one of the same family of viruses is treated very differently in the world. Make sense?

     

    It does, but the point you made was blunted by the fact that chickenpox causes a one-time “breakout,” and herpes simplex recurs. Even if HSV struck once and remained dormant and uncommunicable for the rest of the person’s life, people would still call it “dirty” because it’s often transmitted during sex, but it wouldn’t be as big a deal nonetheless—there wouldn’t be that much more to it once you got past the stigma.

     

    But I hope you know you can always email or PM me if you want to dig a little deeper. :)

     

    I’m happy with how you’re addressing this. For me, this was less about having you defend what you wrote, or making edits to the column, as it was about making you aware of this perspective for when you address the topic in the future. As you said, you’re always open to improving your craft—the quality of a real pro—and while you’re so much more knowledgeable and experienced and ahead of the game than I am, I felt that this was one of the very few areas where you came up short. So I hoped that you could benefit from a small nudge :-)

     

    (By the way, while I could e-mail you, unless I’ve misunderstood this site’s interface, I don’t think I could PM you. I’ve sent and received PMs here in the past, but I think the functionality has since been disabled.)

     

    Comments like yours really help me do that, so thank you.

     

    And thank you for elaborating your thoughts here!

  • prochoiceferret

    I think the tricky thing for me around this is that you’re talking about one of the vrisues where testing is really quite iffy, especially when people don’t have access to the better tests.

    Know what I mean?

     

    Yeah, it’s easy to wish for ponies here. There’s the matter of economics (can’t test everyone), and there’s the matter of science (not 100% reliable).

     

    On economics, there’s not much we can do, short of inventing something cheaper. But we can make sure that people understand what’s not covered when they go for a standard STI panel, and why an all-negative result does not translate into “Baby, I’m clean.”

     

    On science, there’s not much we can do either, short of invention. But there’s an enormous amount of improvement we can make before we reach the point where new HSV infections are largely attributable to false negative test results, or people knowingly and willingly taking a chance in the absence of a test.

  • prochoiceferret

    I would guess that the idea has been floated/prototyped before, but was otherwise canceled as being practically infeasible (e.g. “it rips too easily”), or too expensive to mass-produce. I doubt that it’s a matter of no one at Trojan or Durex ever having thought of it before.

     

    I just want to know why such a product isn’t on the market, at any price. It seems like something so obvious and so mother-of-invention-able when you hear sex educators say “herpes can be transmitted by contact with genital skin that is not covered by a condom…”

     

    (Don’t suppose you have any folks who work at a major condom manufacturer in your Rolodex…?)

  • heather-corinna

    Alas, I don’t! Of course, I also haven’t had a rolodex for a decade or so, either. :P

    They were spendy when they were produced, because they were made very well and truly did not rip easily. I was pretty aggressive in my…erm, consumer testing. My best guess is that both the price and the relative lack of consumers who buy barriers for oral sex at all was why they were so short-lived. Really is a pity, though. They were a lot easier to deal with than a dam and cute, besides.

  • heather-corinna

    You know, one thing I try and do — and you’ll see, I did it here, too — is give people the language so that they know how to ask for a full run of all available tests. That alone does usually elicit a conversation where providers will make clear what they do and don’t provide, or do and don’t think necessary. Now, obviously, the trouble is that not everyone encounters an educator before they get tested, and I, like you, do think clinics themselves should be doing this already. Another big issues is that all too often, even when people do connect with an educator first, a LOT of educators either haven’t worked clinical or gotten their own tests any time recently to even know how testing goes in practical application like this. :(

     

    But a little bit of activism we can all also do, which I really like to do (and which no doubt, annoys the heck out of the clinics I visit), is to rotate who I see for care, and when I’m at a new clinic to ask them about things like this: how they treat young people, what info they assume they have, what info they provide, the works. Then I can do a little clinic education while also taking care of my own health!

     

    I do think you’re shortcutting the issue of disability here in a pretty big way (like, being unable to fill out a long form by hand legibly certainly presents some big social issues, as has, now and then, using said hand with some folks for touching their bodies who feel squeamish), but I think that’s probably a topic for another day.

     

    I think you make some excellent points here, points I can assure you I’ll be marinating in for a while, and I really appreciate the time you took with all of them. Thanks!

     

    OT: Didn’t realize that about the PMs. Just FYI, I can always be reached directly via emailing Scarleteen here: http://www.scarleteen.com/contact

     

    Even more OT: I’m one of those folks who had chicken pox twice. I blame my mother for saying out loud how much more mild my first case was than she expected to have to deal with. The second time round, there wasn’t a place outside my body or inside any of its easily accessible entrances I didn’t have pox. OW.

  • heather-corinna

    Very much agreed on all accounts.

  • prochoiceferret

    You know, one thing I try and do — and you’ll see, I did it here, too — is give people the language so that they know how to ask for a full run of all available tests.

     

    Related to that, I have a question:

     

    I checked out the links you gave at the end of your column, but none of them addressed a set of questions I’ve had lately:

    • What are the different tests that are available for HSV?
    • How do they work? (i.e. biological/laboratory mechanism)
    • What are the pros and cons of each? (accuracy, cost, etc.)
    • Is there anything a person can do to affect their accuracy? (Like how fasting helps certain blood tests)

    I’ve heard mention of “the HSV-nonspecific blood test,” “the specific one,” and so on, but I’ve yet to find a good resource that actually catalogues everything. (E.g. this article just briefly goes over each one; it’s a salad whereas I’m looking for meat and potatoes.)

     

    I do think you’re shortcutting the issue of disability here in a pretty big way (like, being unable to fill out a long form by hand legibly certainly presents some big social issues, as has, now and then, using said hand with some folks for touching their bodies who feel squeamish), but I think that’s probably a topic for another day.

     

    I apologize for that; I didn’t intend to minimize the ramifications of any disability, being a bit hasty and sort of consigning all that to the poorly-chosen words “immediate impact.”

     

    To put my point much more succinctly and less problematically: When people hear “imperfection” or “disability,” they generally don’t think of something that is communicable, like HSV is. So to couch herpes in terms of either of those is misleading.

     

    Even more OT: I’m one of those folks who had chicken pox twice. I blame my mother for saying out loud how much more mild my first case was than she expected to have to deal with. The second time round, there wasn’t a place outside my body or inside any of its easily accessible entrances I didn’t have pox. OW.

     

    What utter misery it must have been :-(  I hope the memory’s faded a bit since then!

     

    Thank goodness we have a vaccine now. Chickenpox was one of those constants of childhood, like bullying, that is thankfully headed for the dustbin of history.

  • saltyc

     

    SaltyC: I wondered why not include the possibility that they could have known his status and had sex knowing that she would eventually become infected. Is that an ethical choice, knowingly becoming infected therefore becoming another host for the virus? I ask this sincerely.

     

    PCF: If done knowingly, then I guess it could be, though I can’t imagine what the thought processes would be on that. I’ve heard of “bug chasers” who intentionally become infected with HIV, but I’m not sure if that’s something they do clear-headedly. It’s a perspective so foreign to me that I have little understanding of it.

     

    If you can’t imagine the thought process, it is nothing like bug chasers, at all. The thought process is: I really like this person and my life is better with him/her around and I like and need sex to cement that bond. I realistically can’t imagine having non-genital sex with him/her for the rest of our lives or however long we stay together, and the very likely possibility of contracting something which may present occasionally irritating synptoms, and may have no symptoms at all, is not enough to make me want to break up now. Is that a perspective that is less foreign?

     

  • beenthere72

    Mine started in my early 30s, maybe even late 20s (I’m 39 now, my last flare up was 2 years ago).  All through my 20s I’d have strange, painful nerve ‘flares’ above my upper lip, and wonder now if that too was related.

  • elburto

    It wasn’t about not running the HSV tests (since hey, they’re expensive and money doesn’t grow on trees), but about not giving the boyfriend the information he needed to know.

    They give a consent form/info sheet which details the tests being done. Which leads me to this:

    I don’t think that excuses them from informing patients of the implications of an STI test that they are administering.
    Of course, that in itself isn’t a walk in the park. If they have a staff member discuss the test and results with a patient, that’s a heavy personnel cost. If they hand out a photocopied information sheet, what if the patient can’t understand it? Or if it’s not in a recognizable language? Or if the patient is illiterate? All the complications of providing health care to a diverse population.

    1) Staff do discuss the tests and implications of the results in depth at GUM clinics. They give pre-test counselling to everyone, it’s not just a case of “Piss in this, now give us some blood, and off you go” and it’s pretty insulting to the amazing work they do to suggest otherwise. They counsel prior to the tests, and prior to giving the results, and after giving the results. And you’re right, it does cost a lot of money, but it’s worth it. They don’t just read from a script, they’re trained STI counsellors who’ve often worked in sexual health for years, and explain things to patients clearly and at their level of understanding.

    2) If someone does not have English as their first language, there are official requirements for NHS facilities to have factsheets in the major languages spoken in the country, and that area. If someone has a rarer language of dialect, Acadian, Xhosa, Catalan – then they point to a language chart, and personnel in any NHS facility call what’s known as Language Line, where there are translators immediately available on the phone for every spoken language. This is at no cost to the facility or the patient, LL are paid in bulk by the public services.

    If someone is illiterate then the info will be read to them by the staff, they can also call any number of free, confidential services if they need further information.

    The NHS isn’t some backwater health facility, it’s a huge organisation with millions of dedicated employees that serve people from every social class, race, level of education/literacy, from countries all over the world. Trust me, they have thought this through!

    Granted, I don’t know how the sex-ed situation in the UK compares to that in the U.S

    Well it couldn’t very well be worse, could it? There’s pretty comprehensive education about disease, reproduction, social and personal ramifications of sexual intimacy and relationships, contraception, where to go for contraception and STI testing etc. But you can’t force kids to listen. All of that takes a lot longer than “Sex is bad. Don’t do it”, or demos of people ripping up paper hearts, or passing around lollipops and asking “Would you want someone’s used lollipop? Well that’s what people think of girls who’ve had sex. You’re used.” Maybe Boyfriend was messing about in his classes, tuned out, didn’t retain the information, whatever. This one guy, failing to realise he had herpes, does not = a country full of people who’ve had little to no sex-ed.

    Oh and finally – no,chickenpox does not recur, but it can lead to shingles which does. I can guarantee you that shingles is so much more painful and life-limiting than herpes simplex. They’re from the same family of viruses, shingles maes it hard to have sex too (as do many disabilities and illnesses), shingles can occur genitally and anally, and when it does, it’s horrific. OTOH some people only ever experience one outbreak of genital HSV, and never suffer after the initial outbreak. It could be that ‘fairies’ got HSV on her genitals from a mild case of oral herpes her boyfriend (and the vast majority of adults) had, that was mistaken for a spot. Neither genital or oral HSV are always immediately obvious. I’ve seen genital outbreaks that look like irritation from menstrual supplies or a change in washing powder, and oral outbreaks that look like one tiny whitehead. If health professionals can find HSV hard to diagnose, then laypeople (especially obviously young ones like the LW and her boyfriend) have little chance of doing so.

  • heather-corinna

    With the testing info, here’s our sticky wicket: we don’t just serve youth in the US, but all over the world. And testing is one of those things which varies SO widely that it would be completely impossible for us to do a good job with pieces that did what you want at Scarleteen, specifically. Of course, there’s also the issue that even just in the US, what tests someone can and can’t get is going to vary a lot based on if they do or don’t have health insurance and what their provider has access to. And on top of all of that, there’s also our very limited resources to deal with and the fact that our model tries to respond most to what youth ask us for.  It’s very rare we get asked for the kind of information you’re asking for, so this is an area where we’ll usually link out and suggest a user asks their healthcare provider for this kind of information.

     

    But the About.com guide to STIs is really excellent, and she’s done some good pieces on herpes testing:

    http://std.about.com/od/herpes/f/herpesaccurate.htm

    http://std.about.com/od/herpes/f/Positive-Herpes-Igg-Test.htm

    http://std.about.com/od/gettingtested/f/timetoherpestest.htm

     

    I also think this piece at the NYTimes is a goodie: http://health.nytimes.com/health/guides/disease/herpes-simplex/diagnosis.html

     

    To put my point much more succinctly and less problematically: When people hear “imperfection” or “disability,” they generally don’t think of something that is communicable, like HSV is. So to couch herpes in terms of either of those is misleading.

     

    Again, don’t want to steer us in a far-flung direction from the topic, but some of people’s reactions to disabilities or persons with disability, and to people who look given ways seen as “deformed” are about ideas or feelings that they might indeed “catch” these things were they to have contact, or be personally tainted by them in some way.  I agree that a reasonable person doesn’t think that, but a lot of people’s reactions to and ideas about both of these things remain unreasonable.

  • prochoiceferret

    If you can’t imagine the thought process, it is nothing like bug chasers, at all. The thought process is: I really like this person and my life is better with him/her around and I like and need sex to cement that bond. I realistically can’t imagine having non-genital sex with him/her for the rest of our lives or however long we stay together, and the very likely possibility of contracting something which may present occasionally irritating synptoms, and may have no symptoms at all, is not enough to make me want to break up now. Is that a perspective that is less foreign?

     

    I can understand wanting to be with a person in that way, especially when one foresees the relationship lasting the rest of their lives. However, the permanence of human relationships is more often an ideal than a practical reality, and while we have divorce and tattoo-removal surgery, we don’t have any way of “giving back” HSV. What happens if the person for which one deliberately infects him/herself turns out to be an abusive ass? One then not only has to deal with finding a new partner as a positive individual, one’s infected status becomes a reminder of that person who is no longer a net benefit to one’s life.

     

    That’s why I would be extremely hesitant to go the “share the virus for love” route. I don’t want to prevent other people from making that decision for themselves, but then, I recognize that they’re in a place that is unfamiliar to me.

  • prochoiceferret

    The NHS isn’t some backwater health facility, it’s a huge organisation with millions of dedicated employees that serve people from every social class, race, level of education/literacy, from countries all over the world. Trust me, they have thought this through!

     

    That’s good to hear, and I’d expect as much from a national health system of a country as developed as the UK. The question, then, is what happened between the NHS’s test counseling, and the boyfriend telling Fairies that “he had tested clean.”

     

    Maybe Boyfriend was messing about in his classes, tuned out, didn’t retain the information, whatever. This one guy, failing to realise he had herpes, does not = a country full of people who’ve had little to no sex-ed.

     

    True, but presuming he represents an average individual, his case suggests that the sex ed curriculum may not be particularly good, and/or that sex is not an easy topic of discussion in the broader culture. As I recall, the latter is certainly the case in British society; it may not be as sex-negative as the U.S., but it’s not all that better.

     

    Oh and finally – no,chickenpox does not recur, but it can lead to shingles which does. I can guarantee you that shingles is so much more painful and life-limiting than herpes simplex. They’re from the same family of viruses, shingles maes it hard to have sex too (as do many disabilities and illnesses), shingles can occur genitally and anally, and when it does, it’s horrific.

     

    I don’t doubt it. But what percentage of people suffer shingles outbreaks, compared to those who have suffered only the initial outbreak of chickenpox? Also, don’t forget that VZV is only communicable during an outbreak.

     

    If health professionals can find HSV hard to diagnose, then laypeople (especially obviously young ones like the LW and her boyfriend) have little chance of doing so.

     

    Which is why it’s so critical to work around the shortcomings of our available medical technology with (effective) education.

  • saltyc

    So you would insist on the non-symptom blood test before having sex? I think everyone would have to if they’re free of herpes and want to stay that way.

    Human relationships are not often permanent, and in your scenario the person who introduces the person to the virus was not worthy of the sex. But there are other scenarios, in which the person would be a great positive impact on someone’s life. Finding the right partner can be very very difficult, and many people are lonely for long stretches of their lives, some regret not bonding with a person for various reasons, and spend years even decades or the rest of their lives without meeting someone as suitable. A good chance of contracting a pretty minor infection as an end-all dealbreaker can end up on the regret pile too.

     

    I wonder how you would handle breaking up with someone because they have herpes.

  • prochoiceferret

    So you would insist on the non-symptom blood test before having sex? I think everyone would have to if they’re free of herpes and want to stay that way.

     

    I, myself, would. And I would do it with someone who accepts that, ideally even wanting it for themself. Would that everyone had the means to do this, of course, if not the inclination.

     

    Human relationships are not often permanent, and in your scenario the person who introduces the person to the virus was not worthy of the sex. But there are other scenarios, in which the person would be a great positive impact on someone’s life. Finding the right partner can be very very difficult, and many people are lonely for long stretches of their lives, some regret not bonding with a person for various reasons, and spend years even decades or the rest of their lives without meeting someone as suitable. A good chance of contracting a pretty minor infection as an end-all dealbreaker can end up on the regret pile too.

     

    This is why I really really really want that HSV vaccine to be developed, even though herpes isn’t potentially fatal (like HIV) and can even manifest itself in a “minor” way. HSV exacts a toll of human misery (and irretrievable choices) that is out of line with the other common STIs.

     

    I wonder how you would handle breaking up with someone because they have herpes.

     

    So do I, because I haven’t yet had to deal with that. There’s no reason why I couldn’t be friends with the person, of course. But if it’s a good ol’-fashioned genitals-and-orgasms sexing that I’m after, then yeah, it would come to that.

  • prochoiceferret

    It’s very rare we get asked for the kind of information you’re asking for, so this is an area where we’ll usually link out and suggest a user asks their healthcare provider for this kind of information.

     

    I figured it would more likely be outside links rather than a page on Scarleteen, but of course, the question is which links are comprehensive and accurate and able to hold up under your good-kind-of-discriminating eye. I’d feel much better about reading information that has the Heather Corinna Seal of Approval(tm).

     

    http://std.about.com/od/herpes/f/herpesaccurate.htm

     

    Yay, these tests are actually reasonably pretty darn accurate! And negative test results are more accurate than positive ones! I can wait four months for partnered sex… it’ll give the other person time to learn what they’re in for!

     

    Thanks for the links, this is the sort of resource I was looking for. Hope these are linked from Scarleteen, for the young folks who want to get their serologic-test geek on!

     

    Again, don’t want to steer us in a far-flung direction from the topic, but some of people’s reactions to disabilities or persons with disability, and to people who look given ways seen as “deformed” are about ideas or feelings that they might indeed “catch” these things were they to have contact, or be personally tainted by them in some way.  I agree that a reasonable person doesn’t think that, but a lot of people’s reactions to and ideas about both of these things remain unreasonable.

     

    Stigma certainly exists for all these things, and I do presume a reasonable attitude when one hears the word “imperfection/disability.” (When I hear “disability,” I still get the prominent image of a wheelchair-bound individual, FWIW.) In light of that, drawing parallels between herpes and imperfection/disability could very well be doing a disservice to the latter….

     

    Anyway, thank you for hashing all this out with me here, and for all of the wonderful work you do! *happyferretdance*

  • arekushieru

    Hey, elburto, I’m from Canada and, in most places, our policy on comprehensive sex-ed most closely aligns with that from the UK.   However, education really counts when it comes from a sex-positive place.  Growing up in small-town Southern Alberta, a place that is very much the little brother of Southern Texas to some extent, couldn’t exactly be called a sex-positive experience, especially when parts of the sex-ed curriculum are thrown out due to outrage over some of the lessons taught, therein.

  • elburto

    See, it’s weird, we don’t really have … you know how ‘The south’ is code for ‘that bit of America where everyone loves God and hates sex, especially gay sex’, that sort of thing?  The Bible Belt, or an ‘East Coast attitude’ also spring to mind for various social/philosophical viewpoints.  Well the UK is pretty homogeneous, in that we have a National Curriculum so all schoolkids learn the same things at the same time, and although there is a North/South divide it’s primarily an economic one, rather than a mindset split.  There’s not really one place you could say was more religious, or somewhere that’s sex-negative.  We’re a pretty even bunch really.  Sure you get pockets of various religions, and majority Conservative voting areas, but even our Conservatives are liberal compared to US Democrats it seems.

     

    So here, where nobody but the education secretary can do anything to the curriculum, there aren’t really excuses.  What’s probable is (and I used to see it infuriatingly often in young people) is that they’re told to read over forms before they sign, and don’t.  They’re then asked “Did you understand it all?” and say “Oh yeah!”.  Without quizzing them on parts of the form, or reading through it with them, you’ve got no idea what’s going on in their heads. A lot of young people take the NHS for granted, and assume if anything goes wrong someone will be there to picvk up the pieces, free of charge, regardless.  There’s an appalling lack of personal agency in some people.  Our 24 year old niece was recently diagnosed with diabetes after having symptoms for five years, but saying she “Couldn’t be bothered” to see her GP.  When my partner took her, the doctor asked “How are you?” and she just mumbled “Alright thanks.”, and needed prodding to get her concerns out.

  • arekushieru

    Well, it’s understandable considering that brain development doesn’t stop or experience a drastic slowdown until the age of 25….

  • heather-corinna

    Brain development doesn’t actually EVER stop, so long as we’re alive.

    (Sorry, just get pretty nitpicky about that when people do that around young people, especially as a way of saying they don’t understand things or react in plenty of ways that older people also don’t. That brain development stuff with young people is shorthand that’s very misleading since brain development doesn’t stop at 25. It only stops when we’re dead.) :)

  • heather-corinna

    Agreed, elburto: in some ways, the issue with her boyfriend may have just been a patient communication issue.

     

    It’s not like it’s at all uncommon for people (of any age), to space out while at the doctor, not read all their forms or ask questions when they don’t understand, etc. It happens all the time, with patients of every age, in every healthcare system. If it didn’t, I’d work a lot less hours in a week. I’d say around 20% of the questions I answer in a given week are from users who realize they didn’t ask their healthcare providers what they meant to or wanted to, didn’t listen, or didn’t ask clarifying questions when they needed to with things like medical terms or how to use a medication.

     

    Mind, some of this is on providers.  I saw your comment up there about the staff at GUM clinics, and I agree with you about being qualified, however, we do always have to make room that in any practice or system, some people are going to be better at their jobs that others, and this certainly is always true of healthcare providers, in any nation or practice.  Not everyone trained and qualified is automatically awesome: some providers are amazing, some are awful, some are somewhere in the middle.  Who knows who this person saw, what happened there, or who it was on (for instance, a provider talking too fast or not explaining language isn’t doing a great job with a patient, but it’s not on a provider to read through a whole form with a patient who doesn’t express having any issues understanding it), if anyone.

  • elburto

    One of my jobs was to work on a health information line, if anything proved that anyone can space out during appointments or consultations it was that. Even really really serious stuff would be blanked on. The most common two calls were either “So I had an abortion yesterday and now I’m bleeding.” or “I got EC from my doc two days ago and I’m bleeding”. Others included “I had a quad heart bypass five days ago and I feel sore, do I need an ambulance?” and “My breasts were reduced/enlarged three days ago and they’re tender. Should I go to hospital?” Being an HCP taught me that people don’t listen, or read info sheets about procedures, or read the inserts in their medications. It was handy that we were there for backup but the new pm closed the service down.

    I have a neuro condition that involves me totally blanking out stressful stuff. I have to take my partner to all my appts. Sadly she has short term memory issues due to auto immune illnesses, so we never seem so know what the doctor told us. I think it’s only luck keeping us alive at this point!

  • crowepps

    we never seem so know what the doctor told us

    There is an easy, cheap solution for this — get a microcassette or digital recorder and take it with you.  If you explain the retention problem and ask the doctor to do so she/he will likely to willing to hold it during the explanation so that you will have the recording to take home with you and listen to if you have questions.  I understand some people’s phones can also do this.  I’d emphasize that in order to protect the therapeutic relationship, it’s wise to be upfront and open about it.  You don’t want the doctor to get the impression you’re “gathering evidence” but instead that this is a collaborative effort.

  • arekushieru

    I know.  Which is why I followed what I originally said with ‘a drastic slowdown’…. However, brain development follows a general pattern.  There may be exceptions to the rule, but they usually aren’t attributed to the process of brain development.  The process of brain development is very important because it is responsible for adults developing a foundation upon which they can create a set of responses to certain stimuli.  Before that point, humans lack that foundation and are, thus, unable to respond appropriately.  After that point, the foundation is present and inappropriate responses can be attributed to something other than incapability.  It’s the difference between someone who is a quadriplegic versus someone who is not, yet refuses to partake in any activities.  We usually compensate for the former, not the latter.