So You’ve Just Been Diagnosed With Herpes

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Man, you’ve had a rough day. Getting diagnosed with herpes is a bit like someone shoved a broom handle through the spokes of your bike when you were cruising along smoothly—suddenly the world is upside-down and everything hurts and it feels like strangers are laughing at you even though the street is empty and there is no one there to see you licking your wounds on the pavement. But there’s a silver lining to getting diagnosed with herpes: most of us have fallen off our bikes too. You’re not alone in having an STI. Here’s what you should know, from someone who has been through everything that you’re going through.

THE KEY TAKEAWAY

You are still you. You are still the person you were yesterday, before you were diagnosed. You are still really great at Super Mario Party, and you’re still a loyal friend, and you still can’t believe everyone hates jelly doughnuts as much as they claim to. The people who love you most in this world, the people who know you to your core, will continue to love you. You will live the life that you want, and no doors have been closed to you. 2 in 3 people in the world have HSV-1, and 1 in 6 people have HSV-2 (those rates are even higher for women, and for people of color). You’re in good company. Welcome to the family.

I remember sitting in my mother’s backyard maybe two months after I was diagnosed with genital HSV-1. I was twenty-one years old and dating a baby sociopath, who had just stood up our plans to have a barbecue with my parents. This wasn’t how I deserved to be treated, I realized as I plucked strands of grass out of ground. I was still badass Ella Dawson from back in April, and she didn’t deserve to be treated like this. I couldn’t know for sure the day that I’d gotten herpes, but I knew it had to have been a few weeks before I’d been diagnosed. I’d walked around for a while not knowing I’d harbored the virus, and for those few weeks I’d loved myself and my life and the world at large. I just hadn’t known yet. I hadn’t changed into a new person overnight because of this diagnosis, my worldview had been colored by an epically bad first outbreak. Herpes hadn’t changed my life; my perspective had changed.

I know, I know, that sounds like total bullshit. Herpes will change some things—we’ll talk about that later. But that soul-crushing confusion and loss and identity crisis you’re having right now? That’s the result of a powerful, invasive and invisible social stigma. Thanks to terrible sex education, poor medical practice and testing, and pop culture that depicts STIs as punchlines and stereotypes rather than super common, we got the message that herpes happens to gross people. You’re not immoral or irresponsible or untrustworthy or damaged. You’re you, and you’re fucking great. Even if you made a mistake, you do not “deserve” to get herpes. Herpes isn’t a karmic punishment—it’s a skin condition that almost everyone has.

Love yourself. That is how you will get through this first stage of “OH MY GOD, EVERYTHING SUCKS.” You are your best ally.

WHAT THE FUCK IS HERPES?

[A caveat: I am not a medical professional. I am, however, a chick with herpes who has spent three years reading everything she can get her hands on. Vive la Google! This CDC fact sheet is wonderful, as is this PDF by the folks at Herpes Opportunity. And this one.]

Herpes is a skin condition. It’s considered a sexually transmitted infection (STI) because it can be spread through oral, vaginal and anal sex, but is often not sexual at all. Family members can give each other oral herpes by kissing when they have cold sores (yes, cold sores are herpes). Many people contract oral herpes as kids and grow up with it, never thinking of it as an STI. You can contract herpes without having sex. You can also get herpes from receiving a blowjob and cunnilingus. You can get herpes from rubbing your junk up against someone else’s junk. The important factor here is skin contact. Condoms do not fully prevent the risk of transmitting herpes for the simple fact that condoms do not cover everything (that being said, condoms are great).

But there is good news! No seriously, there is. Herpes transmission is pretty easy to prevent once you know your status and take whatever precautions make the most sense for you. Over time, you will learn when you have outbreaks (if you have another outbreak at all, which many of us don’t). For some, outbreaks are triggered by sunlight and saltwater, commonly for oral herpes. For others, extreme stress and other illness can trigger outbreaks because their immune system is compromised. You might learn you have prodromal symptoms: weird tells like tingling or itching that warn you’re about to have an outbreak. You’re most likely to transmit herpes to a partner just before, during, or after an outbreak, and if you avoid skin contact at the place where you have outbreaks during those times, you should be fine. The people most likely to transmit herpes are people who do not know they have herpes (CDC fact sheet).

There’s also this thing called asymptomatic viral shedding, which means that herpes wakes up in your body, so to speak, and can be transmitted despite the fact that you’re not showing symptoms. Research shows that individuals with HSV-2 are “shedding” on 10% of days, which sounds scary as fuck but in reality varies from person to person and body to body. We’re all special snowflakes with our own immune systems and viruses. The best takeaway here is to use barrier methods like condoms and dental dams during sexual activity. You can also take something called “suppressive therapy,” or “anti-virals,” which are a once a day pill that suppress the virus in your system and makes you less likely to transmit herpes or have outbreaks. Talk to your doctor about them! I take an anti-viral when I’m in a relationship and having sex all the time, mostly for my partner’s peace of mind and not because I’m actually worried about transmitting.

There’s a lot of scary misinformation about how having herpes impacts pregnancy, and for that I’m going to bounce you over to Britni de la Cretaz. Spoiler alert: don’t worry about it. You can have kids. You can have a natural birth.

Did all that information freak you out? Yeah, I’m sorry. Raw data is intimidating and lacks the warm touch of talking to another person who has herpes. If you’re feeling alone and overwhelmed right now, remember the statistics about how common herpes is. Although everyone has a different experience with the virus, it does not have to be a big deal. Take a break and go watch this adorable video of munchkin kittens.

HOUSEKEEPING: WHAT TO DO RIGHT NOW

Forget about the future for now. Forget about dating and what this means about your identity and all that shit and focus on today. Do you have access to medical care, if you need it? If you are having an outbreak, can you get the medication that you need? A prescription of Valacyclovir or Acyclovir (the generic names for Valtrex, etc) will help sores heal faster. The idea of going to a doctor and talking about herpes might be unthinkable right now if you’re embarrassed, but you will be glad you did for two reasons: you will want medication, and you will definitely want a real diagnosis. Ask your doctor to take a direct culture of your sores—a culture test is a solid bet at a reliable diagnosis, particularly of which strain of herpes you have. A doctor who diagnoses you by sight alone can often be wrong and can’t tell you which strain you have (any doctor who assumes genital herpes is HSV-2 is not a good doctor—many people have genital HSV-1, especially women who get it from receiving oral from a partner who has a cold sore). You can get a blood test later, but in my experience they’re less accurate.

Pain killers like Extra Strength Tylenol dull the sting of sores, and ibuprofen will bring down your fever if you’re running hot. I spent most of my first outbreak in scalding hot baths filled with Epsom salt, which also helped ease the pain. Even if it hurts to pee, drink plenty of water; medication dehydrates you and you need all the strength you have. The same goes for sleep. You need sleep. I had my first outbreak during finals week of my junior year of college and I think I spent most of it napping on top of my books at the library (most of my professors took pity on me and granted me extensions when I told them what was wrong). The important thing to keep in mind is that this outbreak will end, and no future outbreak will be as bad as this one. That’s not some phony inspirational quote: your symptoms will never physically be this bad. That’s how the virus works.

The second part of housekeeping is what everyone freaks out about: you gotta make some phone calls. The people who most need to know that you’ve been diagnosed with herpes are your current and most recent partners, as they are the most likely to have either given you the STI or potentially received it from you. There’s no way to hack these conversations: they might suck or they might be wonderful depending on the person you’re speaking to.

It’s important to be aware of how you’re feeling before you have that conversation. Are you furious and convinced this person got you sick? Maybe wait to cool down. Are you mortified and looking for support? Be aware that you have your guard down and their reaction could help or hurt you when you’re this vulnerable. Are you worried they’ll fly off the handle? Make decisions to protect yourself and your well-being. Delay a conversation you’re not in the best place to have yet. Don’t contact someone if doing so puts you in physical jeopardy (survivors of assault or abuse, click here.) There are also online services that can help you contact someone anonymously, like So They Can Know.

I did these conversations the old-fashioned way: I called my ex-boyfriend and told him I’d just been diagnosed and that he should get tested. He was great about it. You can read about our conversation here.

Telling the boy I was seeing at the time went much less smoothly, because he was a terrible person. Anyone who calls you a whore and accuses you of ruining their life is not someone who deserves to know you. Walk away from those people. An STI does not justify abuse.

As much as these conversations are scary, they’re important. Partner notification is the right thing to do, and it can help you understand when you got herpes (and by extension, who else you do or don’t need to contact). If your past and present partners are good people, they can also be an important source of support as you process your diagnosis.

Finally, other than the people you’ve had sex with, you don’t need to tell anyone else if you don’t want to. Your STI is no one else’s business, and you get to decide who you want to trust with this information. But I strongly recommend telling whoever it is that you wish you could talk to about this, that person who you tell everything to. Maybe that’s your mom, or your best friend, or that co-worker you get lunch with every day to gossip about Hot Kevin in marketing. Dealing with a diagnosis is so much harder when you’re dealing with it alone, and if you’re honest with yourself, you might find that all you need right now is for someone who loves you to tell you that herpes doesn’t change how they see you. Be brave, and be smart, and ask for the help that you need.

Also, therapy is great. I’m just saying.

FINDING COMMUNITY AND SUPPORT

So if everyone has herpes, where the fuck are they? I get a lot—and I mean a lot—of emails from folks who desperately need someone to talk to, and unfortunately I can’t be your herpes pen pal. I have anxiety and it makes it hard for me to support people who have just been diagnosed, which is part of why I’m making this post as a resource for the newly diagnosed who find me and have questions. But there are lots of communities online who can help you out and relate to what you’re going through! Here are some of the places you can go:

Facebook is full of herpes support groups. Seriously, so many. There are hundreds of them. Most of them are secret and unsearchable for obvious reasons, but I’m sure a few mods will jump into the comments here to offer guidance for folks looking for them. I don’t participate in Facebook groups for herpes because they’re just not for me, but they’ve brought a lot of my friends tremendous relief.

There’s a wonderful herpes community on Tumblr, nicknamed herpblr. In my experience, it’s best for teenagers and women in their twenties who have recently been diagnosed.

There are also lots of chat boards and websites available. I’m wary of any website or community that requires you to pay to create an account (which is one reason among many that I hate herpes dating services). But I respect the leadership of Herpes Opportunity, which is great for folks in their thirties and up.

I’m also not the only herpes-positive writer covering STIs! Check out the Herpes+ Writer Directory.

And finally, you do have people in your life who have herpes. I guarantee that you have family members with herpes, friends with herpes, co-workers with herpes, celebrity crushes with herpes. If you’re comfortable telling the people in your life that you have an STI, you might be surprised by who answers, “Me too!”

BUT WHAT ABOUT DATING?

You can still date and fuck and fall in love and have casual sex on softball fields with hot jocks from college. I mean, I am, and if I can then anyone can.

Herpes does not mean that you are lucky to find that one person who will love you anyway. Herpes does not mean that you have to be celibate, or monogamous, or tolerate a less than amazing partner, or only date other people with herpes. Think about it this way: everyone brings their full self to a relationship or a sexual encounter. Some of us have anxiety, or difficult parents, or latex allergies, or can only orgasm with our eyes clenched shut, or are afraid of birds, or have this cool pattern of freckles in the shape of the New York City subway on our shoulder. You have herpes. It’s a part of your life, and that’s fine.

Here’s what having herpes does mean for your sex life: you need to tell your partner that you have herpes before you fuck them. How you have that conversation is up to you. You can put it all out there on your dating profile if that’s your style. You can make a joke about it over drinks at the bar—I like to drop that I’m Internet famous for having genital herpes and see how they react. You can wait until you’ve been on a few dates and then say you have something to discuss with them before you take your relationship to the next level. You can ask them when they were last tested and then say you test positive for herpes and negative for everything else. There are many, many ways to tell someone that you have an STI, and you will find what works best for you based on your personality.

I’ve shared some best practices for telling someone you have herpes on Women’s Health, which you can read here. But to be brief: don’t apologize, because you have nothing to apologize for. Don’t tolerate anyone who is a dick about it. Be prepared to offer information about the virus, but don’t feel the need to justify why they should date you anyway—if they can’t figure out how awesome you are on their own, you shouldn’t have to explain it to them. This is my response to people who ask me, “Why should I date someone with herpes?”

And the more friends you tell outside of a relationship context, the easier it’ll be to say “I have herpes” to someone whose reaction really matters to you.

Once you’ve secured someone to bone, chat with them about what precautions you want to take together to prevent transmission. I recommend investing in some good lubricant, as friction can sometimes trigger outbreaks. Lube also makes pretty much all sex a million times better. Condoms are great, and dental dams are useful for oral sex. Again, taking anti-virals can provide wonderful peace of mind and dramatically slashes the risk of transmission, but they can be expensive depending on your insurance and the jury is still out on how necessary they really are.

Having sex for the first time after getting diagnosed can be weird and emotional (for you, but probably not for them). I wrote about my first time having sex post-diagnosis here. It felt a bit like I was losing my virginity again. Some people find it an unexceptional experience, so everyone’s first time is different.

And finally, you can still have the kind of sex life you want. I’m non-monogamous, queer, and don’t always use condoms if my partner and I have discussed it in advance. That doesn’t mean I’m irresponsible or immoral or a walking health risk. I am an adult having consensual sex with partners who really want to fuck me. It’s as simple as that. Do you, and don’t apologize for a damn thing.

A FINAL PEP TALK

I’ll let you in on a secret: it’s up to you how herpes impacts your life. You get to choose how much having an STI like herpes will define you, if it will at all. Herpes might bring you wonderful perspective and help you find caring, respectful relationship partners, or it might impact your daily life less than spring allergies. We have power over the story we tell about who we are, to the world and to ourselves. You are the strong, brilliant soul who will decide what happens next. And I have faith in you, even if I haven’t met you yet.

Did this post help you? Click here to donate to my sanity fund. 

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17 thoughts on “So You’ve Just Been Diagnosed With Herpes

  1. I just got diagnosed and I am having a melt down. It was transmitted via my current partner that was unaware he had it. We have been together for a year now and I am trying not to blame him or be upset but it’s inevitable. Will having unprotected sex with him risk me having an outbreak? I haven’t had any outbreaks.

  2. I just got diagnosed today and this was something I really needed to read. I’ve been telling a lot of my family and friends because I know that I need the support. Thank you for being outspoken and for trying to help destigmatize this. As a future nurse, I am eternally grateful for people like you. More than you will ever know.

  3. Pingback: 10 Essays I Wrote In 2016 That Taught Me Who I Am | My business is generally pleasurable.

  4. i wish we lived in a world without shame. you are an incredible human ella. truly. i wish i was inspired enough though to live as honestly with genital hsv 1 as you do. i’ll be 50 this year, i got herpes 10 years ago, worst birthday present ever and terrible way to enter a new decade, from a guy who did not disclose. and like you, we used a condom. and like you said, who uses protection during oral sex? i have had just a couple of relationships since then. i don’t date at all now, except for one guy who drank too much and got cut off at the bar. this is the excuse i use for not dating when people ask. shame. there are other parts of my life that i give my attention to instead. but i will always long to share my life, not matter what i try and make myself believe. but you. you are as it should be. and i am thrilled to follow your experience.

  5. I cannot believe how little “accurate” information is available on HSV1 on the genitals. Even doctors are not well informed when providing you with the facts. I have some questions for you that I didn’t know if you knew the answers to, but here they are Elle…..

    I was newly diagnosed with HSV-1 on my genitals which I got from my boyfriend who also has HSV1 on his genitals and we do not have protected sex, since we share the same virus that I “caught” from him as a result of him receiving oral sex from someone else….

    1. Can I get HSV1 on my lips from giving him oral sex even though I am already a carrier of HSV1 on my genitals?
    2. Should we both be taking daily antivirals for HSV1 on the genitals? (Antivirals stop HSV from shedding, prevent outbreaks, shorten outbreaks, speed healing, and reduces transmission)
    3. Or should we watch and wait to see how our body reacts to the new virus since we are in a monogamous relationship, yet both have HSV-1 on the genitals and are recently diagnosed meaning it is both of our first year living with this virus?
    4. Do you recommend herbal supplements instead?
    5. Will it always appear in the same location or can it migrate to another location within the genital region?
    6. Can I use a bar of soap to clean myself or will that infect other areas?
    7. I can’t stop thinking about this morning, noon, and night…Can you give me some statistics on the HSV1 that might make me calm down, since I am always anticipating the next outbreak

  6. Pingback: Wednesday Words: How do I talk about herpes? | Sex Gets Real

  7. Your articles are greatly inspirational and help many people I’m sure. For that I am happy. However, the success you’ve had in dealing with this and a sex life beyond your diagnosis has not been my experience. I have now been in a two year forced celibacy due to my genital HSV-1 given to me by my ex wife who to this day only has “cold sores”. She is free do do whatever she likes and I have been caged inside my own body. To say that it’s maddening is an understatement. I wake up in sheer terror every morning realizing that I am still me.

    • i don’t understand. your wife won’t have sex with you now that she’s given you genital herpes? she seeks sex elsewhere? i do understand how you feel though. i’ve cut myself off too.

  8. Pingback: Have questions about herpes? | cppwellness

  9. Someone just turned me onto your articles in Women’s Health. I run a H Support Group and there are many Support & Social Groups around. I am not sure if you are aware and would love to speak with you if you want more information on how to get involved.
    I love the way you write and plan on using your articles in my Support, as well as giving my members the link to your blog. I think you are doing great work. Please reach out to me if you are interested in finding out more about the H Community.

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