Sharing our stories

We asked our community two questions. How has HSV affected your life? And what would better treatment or a cure mean for you?

How has HSV affected your life?
I was diagnosed with HSV-2 at 21. The doctor was very abrupt and offered no support, medically or emotionally. It was, quite literally, soul crushing. I’d been with my boyfriend 3 or 4 months at the time and made him get tested. Negative. Looking back, it’s clear that he is an asymptomatic carrier who got a false negative because he wasn’t actively shedding anymore when he was tested. In the years since I’ve also been exposed to HSV-1. As I’ve aged I’ve found my symptoms have worsened and I’ve been on antivirals to mediocre success for nearly a decade.

That’s what helps me hang on and gives me hope.

I’ve had two kids during this time and motherhood increases the transmission anxiety to the point of obsessive behaviors and occasional suicidal thoughts. I am never not worried about my children. We discourage sharing drinks, food, utensils, and cups, we encourage thorough hand washing, and I never kiss them. I can’t kiss booboos like other moms. The skin on my hands is reptilian from my constant hand washing. The stigma around the virus means I have no one to talk to about it, save my partner. My physical symptoms are, luckily, more annoying than anything else, but the mental and emotional toll is excruciating. Having contracted it from someone who is asymptomatic, the fear that I’ll transmit it during asymptomatic shedding is constant. This is why I don’t ever kiss my children. If it weren’t for Herpes Cure Research group I’ve found and their proactive work towards awareness and supporting cure research I would be a hopeless, anxious mess.

What would better treatment or a cure mean for you?

If there was something that could stop the shedding and reduce or remove my chances of transmission it would be a life saver. My biggest fear is giving this to someone who might have more extreme physical symptoms than I do. If I have to deal with my own physical symptoms and risks forever, so be it, but knowing that I could no longer transmit anymore would mean I could kiss my kids. I would do anything for that, risk anything. The timeline for treatments is long and chances are that when/if anything is available my kids will be teens or maybe even adults. I’m in my early 30s and my hope is for something that will let me kiss my grandkids. That’s what helps me hang on and gives me hope.

E.R., New England, USA

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