HSV-2’s hidden impact on millions of lives

HeartacheI received the letter below last week, and I thought it was worth posting on the blog (with the permission of the author), as it beautifully summarizes in a personal way the impact that HSV-2 infection has on millions of people’s lives.

At the close of this letter, the author writes “I wish you luck in your attempts to secure funding. If I were rich I would fund your entire venture. But, sadly, I am not. Which doesn’t mean I’m not willing to donate. I would be happy to, and to participate in your trials. Any little bit helps, right? If you accept public donations, please don’t hesitate to put up a link or let me know where I can do so.  I am grateful for your patience and hard work. Thank you, and all my best, XXXXXX”

Thank you XXXXXX for your thoughtful comments and insights into the hidden toll that HSV-2 infection takes on peoples’ lives.

FYI, To Donate to my lab’s research into the development of a HSV-2 vaccine that actually works, just click on the “DONATE” tab at the top of the website page.

– Bill H.

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Dear Dr. Halford,

I want to begin by thanking you for your blog. It is one of the few places where I have found real information beyond generalities and simple platitudes regarding HSV-2. It gives me hope just to read something by someone who cares enough about the disease and its consequences to dedicate their life to it. On to my purpose here…I have in the last year been diagnosed with HSV-2, despite my cautious approach to sex. It has been one of the most humbling and humiliating experiences of my life. Many try to remain positive when given the diagnosis and in its aftermath, but the truth is that (at least in the US) one instantly becomes a leper, an outcast, a pariah. This is the true effect of the disease, in my opinion—being stigmatized, having your very existence reduced to a single word.

I do not mean to minimize the serious consequences HSV-2 has for those who have recurrent outbreaks. I sympathize with them, and indeed, the treatments you and other doctors are trying to develop are undoubtedly meant first and foremost to alleviate their suffering, a goal with which I absolutely agree. But as you well know, most carriers suffer little to no outbreaks. I am, thankfully, one of them (so far, at least). So perhaps my opinion is a bit biased, but for the majority of us the pain is psychological.

I would go so far as to say having to have “the talk” with potential partners and seeing their revulsion or disappointment is worse than any actual visible sore or lesion—I had a cold sore on my lip long ago and it barely registered beyond an annoyance, and no one gave it a second thought. Conversely, I have yet to meet anyone for whom dating an HSV-2 carrier isn’t a problem. No woman has ever agreed to continue seeing me once I told them, despite my honesty and the information I provide about the small risk of catching it. They simply don’t want to risk it for what (at least in America, with its dating culture and high divorce rate) will probably not pan out anyway.

And why should they? I wouldn’t have, before I got it. I can see it in their eyes whenever I first bring it up, because they look at me—a successful, tall, blonde, athletic individual—and are excited about the possibilities of dating me. But when I bring up HSV-2, I see that excitement wither faster than grapes in the sun. I’m sure this is not everyone’s experience, but in mine, I have yet to meet a woman who would consider dating a man with HSV-2 when so many uninfected individuals exist as an alternative.

No one makes that good of a first impression. Trust me.

I am most acutely aware of my outcast status now when I drive and listen to music: when I hear romantic songs, I can’t help but think those are not written for me anymore. There is no spontaneity in love for the afflicted, as HSV-2 stands as a barrier against any organic growth between two people. It is an artificial wall that destroys romance, for you can no longer let anything germinate of its own accord. No one’s idea of a romantic evening is to have to listen to someone warn them of infection right before the clothes come off.

All of this sounds like the simpering of some self-loathing pessimist, I am sure, but that’s what the disease does: it turns you into something you never were and couldn’t ever imagine being. This is the true cost of the disease for most of us: a life of (at least perceived) loneliness and abandonment. Being unwanted. We can never again be freely intimate with an uninfected partner for fear of making them a leper too, or for fear of infecting each other in new locations. It is the most insidious thing I have ever encountered, as if it were bioengineered to make its carriers suffer. And it pains me to know that few people care, as if the world is telling me that I deserve to have this disease, that its not worth curing. The way US society cracks jokes about it…it is fear, nothing more, and we joke about what we fear. And we fear nothing like something that takes away our freedom. And that, I suspect, is why HSV-2 is the target of our collective terror: we are slaves to it, unable ever again to escape the yoke it places on us.

The disease “potentially” robs you of your health and well being, but it “absolutely” robs you of your freedom and dignity. I have heard people say that nothing can rob you of your dignity. Try telling that to a Herpes sufferer who has just tried to explain to a date that they have HSV-2 only to have them get up at the table and apologize before leaving you there by yourself to pick up the check as everyone in the restaurant looks on. Try telling that to someone whose significant other left them because they found out they had HSV-2 but didn’t know and assumed that they had to have cheated. And even if they don’t leave, try telling that to someone who can never be truly intimate with their partner again because they might catch it, or catch it in new locations. It is a most impotent and undignified feeling. It is a type of death: the death of who you are. You become something new but worse, like a zombie, reborn but never better than you were before you were infected, fighting a losing battle of attrition until the next time you are humiliated by someone else or have an outbreak that reminds you of your status.

It is difficult to come to grips with the disease, especially when one gets it despite practicing safe sex. I wasn’t told that a condom wouldn’t prevent it; I wasn’t told about asymptomatic shedding; I wasn’t told that STI tests rarely if ever test for HSV-2 unless specifically asked. How can we ever assume to combat this disease if we don’t make us as a society more aware of this knowledge? I feel cheated, for if I had known this, I might have made different choices, as I suspect many others also might have as well. We all assume risk when we become sexually active, but I would certainly have known to ask partners to present me with an actual HSV-2 negative test before shifting to condomless sex. Though of course that wouldn’t even necessarily have mattered, since HSV-2 is so insidious in its mechanisms and few (at least in my sex-ed. experience) were told how it works, that it transmits via the skin and not fluid. My whole being hums with rage at this lack of information, and while I would never consider this, I understand how some could feel such rage that they would carelessly continue to put others at risk out of some misplaced need to punish the world that did this to them.

Most days I cry, for myself and for anyone who has the misfortune of becoming afflicted. Every day I pray—and I am not religious—that someone finds a cure or a therapy that will eliminate it from my body. And in lieu of that I pray for something to rid myself of the asymptomatic shedding, which is the true culprit here. I suspect if we could tell when it is active, people would be less concerned because it would be easier to control—in other words, our freedom would be restored—but as of yet we have no way to tell and no way to eliminate it, no easy home test like a prick of the finger that would let us know when we are contagious. This might help us solve the problem, and I wonder why no such thing has been invented yet. Perhaps because it’s so much easier to just pop a pill…

But my prayers and protestations have so far fallen on deaf ears, likely because, as you say, people won’t consider a treatment that we know works—a live attenuated vaccine—simply because it is deemed too dangerous. What does that even mean? It is unclear to me how/why it is dangerous. While scientists claiming this continue to vacillate, hundreds of thousands of people continue to suffer and become newly infected every year. I agree with you wholeheartedly: which is more dangerous, to let that continue, or to keep trying these feeble attempts at a therapy that will allow Big Pharma to keep sucking away our money for a treatment that at best will reduce but never eliminate the outbreaks or, more importantly, the asymptomatic shedding? It is madness, the very definition of insanity as quoted by Einstein (unless, of course, your goal is to bleed dry those who suffer from it by maintaining their leper status, which requires them to feed off of your drug-sodden tit).

The general lack of information or concern for sufferers of this disease is heartbreaking, which I can see now only because I count myself among them. I want to do my part and help make people aware of this disease and the toll it takes on its sufferers.

Having a place on your blog where such queries can be addressed would go a long way toward reducing the stigma and pain associated with treating and acquiring HSV-2. You are an expert, and your opinion matters to me, and the many others, who read about your work with continued hope for a cure.

I wish you luck in your attempts to secure funding. If I were rich I would fund your entire venture. But, sadly, I am not. Which doesn’t mean I’m not willing to donate. I would be happy to, and to participate in your trials. Any little bit helps, right? If you accept public donations, please don’t hesitate to put up a link or let me know where I can do so.

I am grateful for your patience and hard work. Thank you, and all my best,

XXXXXX