Herpes

IMG_2249I was diagnosed with genital HSV-1 in May 2013. I write about what it is like for me to live, date, and be sexually active with the heavily stigmatized STI.

I have also appeared on MTV’s Girl Code, HuffPost Live, and the What’s Underneath Project. You can also listen to me on the Savage Lovecast with Dan Savage.

Watch my TEDx talk about herpes stigma!

Read the transcript here.

Essays on my blog:

So you’ve just been diagnosed with herpes. Start here! I cover all the basics in this post: what you need to know, who you need to tell, how to protect your partners, where to find community, and the pep talk you definitely need right this minute.

My characters care about safe sex because I have to. This was the first time I put in print that I have herpes. This essay was my take on a debate about whether or not characters in erotica should have to use condoms.

What happened after I told the Internet I had herpes. This is how everyone I knew reacted to me going public, from my parents to my exes.

The conversation that never happened: On herpes and abusive relationships. How I got diagnosed. We need to talk about emotional abuse and STIs.

herpes virginity leavesHow I lost my post-herpes virginity. Having sex after getting diagnosed for the first time is scary! This is how it went for me.

Herpes two years later: On sex without condoms. Shockingly, I don’t always use condoms now. This essay is about why (and how).

To the teenage girls who have herpes. This world tells teen girls they’re worthless. Don’t listen.

Why should I date someone with herpes? A rant we all need to make from time to time. Stop asking me this question. Send this to anyone who is rude to you.

Why I don’t call herpes a “gift.” The STI community needs more language to describe our experiences, but this is slang I can’t get behind.

The badass women of TED. What happens when you have a herpes outbreak at a TED conference.

A lesson in herpes stigma, via Facebook comments. Because BuzzFeed’s readers are pretty terrible people.

Dear Internet commenters who really don’t want herpes. Sometimes you gotta talk back to the trolls.

the-herpes

Herpes Interviews

  • That wrestler I dated. This long conversation wound up being intense and personal. My ex and I talked about what makes sex unsafe, and if he worried about contracting herpes from me.
  • The ex I had to call. Getting diagnosed meant calling my old high school sweetheart to ask him to get tested. It was terrifying. This conversation is about how we remember that phone call.
  • The best friend. My college roommate had a front row seat to my diagnosis… and to the abusive relationship I was in at the time. She and I gabbed about that, as well as Vulvar Vestibulitis and why adults should talk about sex before having it.
  • The guy from the bar. I met a really nice dude at a bar like it’s 2004 or something! I told him I had herpes that night, we had sex the next night, and we’re still having sex now. Hurrah.

For MTV Founders:

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For Women’s Health:

women's-health

disclosure-tips

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On herpes journalism:

TIME Magazine ruined herpes journalism. Here’s how to fix it. My site editor Gabe Rosenberg and I read that 1982 cover story about herpes and it was goddamn awful. We dissected it and thought about what good herpes journalism would look like.

Why having a boyfriend doesn’t cure herpes. Please, please, please stop publishing essays about how you finally found someone who would love you despite your herpes diagnosis. There are other ways to heal, and there are better ways to challenge stigma.

5 rules for better herpes journalism. Because seriously, can we stop telling the same tear-jerking bullshit inspirational story? Oh my GOD.

RANKEDHeadlines on the herpes WHO report: RANKED. The World Health Organization discovered 2 out of 3 people have herpes. The Internet lost its mind.

I am not “suffering” from herpes. STOP DESCRIBING PEOPLE WITH HERPES AS “SUFFERERS.” OH MY GOD.

Why we need clicky, accessible herpes writing too. Some thoughts on writing about herpes for a mainstream audience, including poppy listicles.

 

102 thoughts on “Herpes

  1. Ella. Thank you. I found out almost 4 years ago that I have HSV1 AND HSV2. So, I’m in the double group. But your videos helped me have the talk about herpes with other people. I just watched your TedX videos and it gives me hope that one day the stigma will be gone.

  2. Well.. let’s see. I’m 21, I was diagnosed with HSV-2 about 5 months ago (2 weeks before my 21st birthday). I’ve been really trying to dig deep to find the information that I need because quite frankly, I feel beyond uneducated. I started out on Valtrex 1GM (once daily, twice for recurrences) due to having 3 outbreaks within the first month. Now, 5 months later, I am on my 7th outbreak, just switched to Zovirax 400 MG- twice daily. But this most recent outbreak, with my best educated guess, has been lingering for close to 2-3 weeks now. I’m still not fully aware or my signs leading up to having an outbreak. As well as simply being able to tell if I am having one or not.. Which is scaring the sh** out of me. I’m just trying to educate myself the best I possibly can. Did anyone else have this many problems at the beginning??

    1. I was officially diagnosed last year. I remember my first OB and going to get looked at by some apparently incompetent people at planned parenthood. I even asked the lady if she was sure it wasnt herpes and she assured me it wasn’t. I had several OB after that and then it spaced out…however last year I got the flu then pneumonia which in turn gave me the worst OB of all time! My first OB was nothing compared to this one but when your immune system is down OBs happen. I feel like after I found out for sure I spent so much time worrying about it and stressing over it that I kept getting them. When I finally started to let go of the worry and stress they became more sparse and I was able to start distinguishing the prodomal symptoms before the outbreak which for me is quite unpleasant…kinda feels like someone kicked me in my vagina and the pain keeps lingering. Hope this helps.

    2. Regardless of your symptoms, yeah…it’s tough. Even without many outbreaks it is something always prevalent on your mind and can take over. Much has to do with stress and your overall physical health sometimes…meaning, like so many of us…own you and your life! May or may not help, but don’t let it define you…you define you. Take control and regardless I promise you that you will feel better for it. No magic pill and we are here for you to help and coach through life…you have amazing things to do, accomplish, and love…it WILL happen, coming from someone who is struggling…but let’s get through this together! Because you are great!!!

    3. Sabrina, I just found out I have HSV 2 yesterday. And I have been trying to find information on how often I should expect a break out and I terrified.
      I’m terrified because I have HSV2 it’s going to be as bad as my first outbreak. I couldn’t walk, I couldn’t wee I was in so much pain. I can’t do it.
      When do the out breaks get better? Does the medication help? Are there side effects to it?

  3. This blog is amazing!

    I searched the topic because I am feeling a bit sorry for myself. An outbreak is imminent and there’s nothing I can do to stop it happening. Sometimes it seems like I can stop it by getting an early night, eat better, de-stress and find the Zovirax. It might sound like BS but I have become better acquainted with my body since contracting HSV-2 when I was 21. I’m 40 now.
    As annoying as it is when the virus is active and ‘doing it’s thang’, there are times when I am honestly grateful for it. The diagnosis meant I could no longer be carefree with my sexual health. Whilst I was going through an extended phase of not caring about myself or even how long I remained on this plane of existence, HSV-2 brought home to me that shit does happen, and that it could have been worse. I realised I was not ready to ‘check out’ yet.

    It took a while to believe that anyone would ever want me again. I have had ‘that’ conversation on several occasions. Some went well, others not so. Memories of those rejections still sting if I dwell on them, but I know I did the right thing. I choose to focus on that and the acceptance I received more often than not. ( This almost makes me sound like Don Juan!! I most certainly am not ☺) Just telling the story of how I caught my inconvenient, if potentially life saving friend, makes me chuckle. It was rather unusual. Not one to tell the grandkids though!

    I’ll end this waffle by saying what an amazing blog you have written Ella. I was not and still am not brave enough to stand up and say it as it is, in the face of misinformation, prejudice and downright ignorance. Thank you for making be smile and remember I’m not alone.

    1. Chris…definitely rehomes us and yeah…deal with it. Forces us into healthier choices, not always a bad thing!!! Thinking in the long run it honestly could have saved our lives. Basically screw it, learn from it, and lets move on to the next adventure!!! We got this!

  4. Ella, Thank you! I came across your YouTube video today and just had to have a cry.
    This is what I needed to hear when I was diagnosed October 13 2016. Nearly 2 years ago.
    This is what I’ve needed to hear almost every damn day since October 13.
    The partner who had given me herpes didn’t understand how it worked, and blamed and shamed me for having my first outbreak – until the doctor at the health unit explain that he was the source of my HSV1. My partner apologized to me, but refused to let me bring it up again. Because it made HIM feel bad.

    I had confided in my parents and one of my best friends, but no one knew how to help or what to say. I stayed with that partner until 3 months ago because I felt untouchable by anyone else.
    It has only been recently that I have embraced the fact that, yes it sucks that I have herpes, but my life isn’t over, my sex is still bomb, and I’m less of a ‘threat’ because I am aware and educated.

    I am also committing to breaking the stigma. Your words are so incredibly strong. Thank you!

    – No longer alone and afraid

    1. Educate yourself and like Ella said…we are worth it! It’s now a new screening mechanism for me…meaning I am far more worth the risk, because yeah…we are awesome.

  5. Hey Ella,
    first of all, thanks a lot for all the crucial information you posted on your blog, it helped me big time. But I still got a question, to which I can‘t find the answer anywhere: can I still consume alcohol and caffeine? I just love both of them! And if you would say in moderation, what would you consider it to be ? Have you had an outbreak because of drinking a little too much of both?

    Lots of love

    1. Hi Ella,

      I was hoping you could help me. We provide women with access to discreet, affordable herpes & feminine care treatment (consultation & medication) and as a lot of our customers using us don’t have healthcare, we’d love help getting the word out there as an affordable option for treatment. Would you be willing to talk to us? We’d really appreciate it!

      Thank you very much!

      1. I am doing research about your site. Its a great idea. However so little information or web presence ,,,, hard to know if its fake or not. Wish you had a licence # or some way to check that you guys are real

        1. Hi! Yes we are legit! You can check our LegitScript certification at the bottom of our site (a 3rd party accrediting service that Google uses and requires in order to advertise prescription drugs). All of our physicians and partner pharmacies are U.S. licensed (they can only dispense medication from specific, certified manufacturers), we store all of your data in a HIPAA compliant manner and our payment processing is PCI compliant.

          I hope this helps! Please let us know if you have any other questions.

          Best,
          wisp support

  6. Hi Ella,

    I’m in a dilemma and want your opinion on this. When I was with my ex, I suspected I had genital herpes because I was having a fever, felling itching and tingling down there, and had blisters on my thighs. I went to the sex clinic. The doctor told me I had a yeast infection and my blisters were just some kind of derma disease and sent me home. Now seven months into breaking up, I took a blood test and found out I have genital hsv1. The doctor also said I could’ve had it for a while. I might’ve given it to my ex because I remember he was having classic primary outbreak symptoms when we were together. I asked him to get tested multiple times because I was concerned, but he said there’s no way he could’ve gotten it if I was in the clear, and it was simply balanitis.

    We have not contacted each other since then. I believe I had given it to him, due to his lack of sexual history and partner before me. However, considering he’s dating someone new and blocked me on all social media, I don’t know if telling him is the best option. I cannot anticipate his reaction and afraid he’d go around telling people and taking revenge on me. Also, If he have it, he would’ve contacted me right? I’m losing sleep over this.

  7. Hi Ella & Womankind! Your work and honesty has helped me start a women’s wellness brand (hellowisp.com), where (all) women have discreet & easy access to their herpes medication (and more). More importantly, this will be a community, led by medical professionals but made up of us, where women can get support on issues that we’re dealing with and the best ways to get through them.

    Thanks for everything!
    Mckinzie

  8. Hey Ella,
    It took me years to come out as queer. When i was finally making moves towards accepting myself and about to explore the sexual relationships I wanted with women, I contracted herpes from a male partner. Now i feel stuck – there is such little information about there on how to live as a queer woman with herpes. I feel like I won’t ever get to have the sex I want to. I’m trying not to feel defeated and not just turn around back to the closet. Any suggestions? Resources?

  9. Hi.
    Ive had hsv 1 with oral outbreaks for as long as i can remember. Pretty sure i got it from my mom when i was real little and no one knew much about cold sores and hsv 1. Anyway. I am dating someone now who knows that i have it and didnt respond well when i had my first outbreak while we were dating. Anyway, we worked through it all and they have become a lot more understanding. We kiss and make out and all that when i dont have an outbreak, but they wont share silverware or cups or straws with me, or like try my ice cream cone. This lack of sharing was never discussed until i brought it up. For me there is something bonding about sharing things like that when youre dating. For them, they said it didnt seem important but not sharing seemed like a small way to reduce chance of transmission….i want to respect their boundaries, but also i feel like their fear of becoming herpes postive is so far beyond what i have experienced in any other relationship, romantic or not, that it is just sort of hurtful. I guess im just wondering if they are being weird about it or if i need to be more understanding of their fear. Or even just would like to know how other couples handle this. Do you share food/silverware/drinks in times of no outbreak?

    1. Your partner is being ridiculous. Your hurt feelings are totally valid. If they want to be with you, they need to treat you well—in this case, that means not treating you a leper.

  10. Hi I’ve had this for at least 6 yrs while my daughter was born scariest time of my life nw I have 1yr old boy fit n healthy wen I 1st I had this I was terrified because my gender broke out in blisters it look like dead flesh on my body took time to clean up & never heard or suffered since then I just watched ur video would u mind telling me how to keep extra careful I don’t slp around but I train a lot which mean sweat also I travel to different country competitive fight so a lot gets exchanged pls can u help

  11. Hi Ella!

    I was just recently diagnosed with HSV-1 Oral. It’s only been almost 2 weeks since I found out, and I was so devastated I wanted to end my own life, I called my parents begging them to not be mad at me and to forgive me. I knew something was wrong with me cause I was feeling different with myself and I had that gut feeling, so I decided to get tested for all STDS and I meall ALL! I know I sound a little selfish but I am only 19 fixing to be 20 in July and with a 3 year old son! I knew that ending my life would leave the rest of my loved ones would be a selfish thing of me to do. So I prayed and prayed for a miracle to happen and not let this be true, so I was in such in denial that I ended up getting retested. Waiting for those results felt like forever and I still kept praying and praying, I was a bit upset with God cause my results still came back the same. I asked for my range, but the lab work done didn’t contain that info. I’m debating on getting retested again just to know the range. I feel that I have taken this all so well just for it being 2 weeks, sometimes I forget I have it and I tell myself, you are still you! This does not define me! And other days it creeps back into my mind and I start to feel a little sad at the fact this has happened to me. I just recently ran into your TED Talk and you have given me so much hope and strength, I know that this is so common, and I have yet met anyone else who has Herpes. I am currently still with my boyfriend/sons father for almost 7 years. He tested back negative for both herpes, and he has been a huge help and understanding which I could never be more thankful for. I have never felt so low in my life till I got this news, but I’m glad that I’m not alone and you have made me feel more sane about my situation and that’s what I really needed. Thank you for sharing your story, you are one brave woman. Xoxo!

  12. I had herpes simplex 1, it’s been two years and only had that one-time outbreak 2 years ago. My boyfriend loves me that really confuses me all the time, because he is afraid of contracting HSV 1 from me. This year he started to avoid kissing and less sex of course. Ella, if you are kind enough, would you tell me how did your boyfriend deal with it? I saw you on Youtube and found your speech in TED, which is really inspiring to me. Somehow, I feel that I am a harm to my boyfriend, no matter how hard I try to comfort myself for his avoiding behaviors.

  13. Hi Ella! My name’s Marissa, I’m 17, and I’m a wrestler. I was diagnosed with Mat Herpes about 2 years ago. I was in a relationship at the time and my boyfriend had broken up with me 2 days after I was diagnosed. We were dating for 2 years and we have known each other for 7. Obviously I was devastated dealing with all of this at the same time. I tried to kill myself twice because I thought there was no hope left fro me. It’s really hard to deal with because I’m so young and everyone around me is very ignorant. I had grow up really quickly and dating certainly hasn’t been very easy, but your posts have certainly helped me a lot. Thank you so much for giving me hope! You’re very inspiring!

  14. Thank you for your TED talk, it was awesome. I have carried this with me for 25 years. I turn 50 this year and have had my share of crap since my diagnosis when I was 25. I have had a huge struggle with this in my life. I have been single for over 20 years. I have learned it all, and never know how to tell a partner. I also don’t want to give it to anyone I love. or anyone at all. I did the same things you did, I just didn’t talk about it. Sometimes I put it in their face, told them and saw the same reaction. I have been rejected after a few dates, or maybe the guy just wanted to try me once and not take the chance long term. I was never that girl The doctors told me well if they don’t accept it they don’t like you enough. I was diagnosed in the 90’s, doctors didn’t know unless you were having an outbreak. I had an outbreak and it was positive, then same symptoms, I got a negative diagnosis so a free pass. No, years later something else happened and I had a blood test when it wasn’t available, it was positive. No turning back. Here is the truth, there is much worse that can happen to each of us. But it is a stigma that people laugh at, lie about and those of us that are honest get burned. You have to have a big backbone to have herpes, that is where it lives, Let’s keep it there and just be normal. It is a stigma, I have had 3 outbreaks in my life….I have had it since I was 25. So 25 years nothing. I guess I don’t get chicken pox that often. Don’t carry this or make it who you are. Cancer happens, people die, this hurts it breaks your heart. It makes us real, and opens us up to be who we are. And those that love us anyway really are deserving of who we are. You will make it to 50 honey, keep going. It doesn’t make you who you are, don’t let it make you. Men will always have an issue with it, but they get over it. If they don’t they just were playing. Someone will come along and see how much this broke your heart. If not you faced it rather then letting it beat you.

  15. Ella, you are an inspiration. I watched your Ted talk and cried. I was recently diagnosed with HSV2. I noticed a sore on my lip, having never had a cold sore, I was in denial as to what it was. I went to my doctor and she said it was Herpes. I got tested. I have read all I can on not transmitting to others and I am still confused. Can a person with HSV 1/2 transmit during silent shedding, the virus to others even without an open sore? If so, I’m so saddened at the thought of not being able to kiss anyone I love out of fear of transference. Can you help me understand.

  16. God I haven’t had a chance to read all through your sight yet, though I am excited to. I contracted herpes just over a year ago and it has dramatically changed my existence, mostly internally (hahahaha….yea, sorry,no pun intended.) Either way I’m stoked this exist. Everyone knows I have herpes, the only way i knew how to cope was to tell every one. So, I did. I don’t really care now, but yea, excited to find others to read their experience.

  17. I just watched your ted talk and it brought tears to my eyes. THANK YOU for being you and for everything you stand for .

  18. Just wanted to say a huge thank you for everything on this site. Last week I was in tears, having found a classic HSV lesion after a month of being under extreme stress. After reading horror stories on forums I was terrified of telling my fiance, who I’ve been with for 5 years and am marrying in 2 months (great timing right?!). I was convinced he’d think I’d cheated or lied to him. I spent 24 hours freaking out and finally calmed down after listening to your Ted talk and reading the stories on here. The moment came and I mumbled out what was going on (with a few tears) and he was AMAZING – confirmed all the things I knew about him before. He was just worried that I was ok, not in pain and not blaming myself. We went to the doc together who confirmed that either of us could have had this for years. We decided not to both get blood tests (though my fiance was happy to), and we’re just going to listen to my body before having sex going forwards.
    Thank you again for being upfront, truthful and taking the stigma away from this unfair virus. I’m hoping my story will also help other terrified people in a similar situation.

  19. Hi. I’m just looking for some Facebook support groups and/or dating sites that I can try for people with herpes. Would love it if you could help !! TIA

  20. I am up all night, suddenly compelled to fanatically research all things herpes as I did 6 years ago when I was diagnosed with HSV2. I am compelled to share my story here within an INTELLECTUAL and EMOTIONALLY CAPABLE space. In 6 years the conversation has changed. I am so grateful. I cry with you. I cry for every woman who has felt this. In triumph and mostly from the grace of others who go to great lengths to love us wholly and take the time to help support healing. People who will spend three years working on healing and loving you. They are out there. They exist. Being honest is a gateway to more honesty. My story is awful, but I share because I have overcome. It is important, as many of us with shock worthy stories have seen the reactions and pause before sharing. My father sexually abused me and first exposed me to herpes as a young child. I remember having “rashes” on my face and hands that hurt as young as three. I of course did not get std tested until much later. And doctors do not assume another white, middle class, person of local status is abusing their baby. But this happens too, far too much. I WAS extremely promiscuous (as follows most upbringings like mine). I did all of the drugs. Interestingly, I did not expose myself(I was careful, somehow, luckily) to any stds during my teenage years of prime activity. I knew I had HSV2 after being date raped by a “friend”. I had terrible outbreaks on my vagina, hands, and on my face. It was a very very painful time, as it also brought up clarity about my past abuse. I dropped out of school (I had a full ride writing scholarship) and continued to do drugs but stopped having sex. I finally began a diligent yoga practice and riding a bicycle(my car broke down) and essentially had nothing but a kind teacher who offered me free classes, a bike, and herpes. I got clean. I met a man who loved me through three years of intense healing and courtdates to protect myself and community from my father. Became a yoga instructor. Started playing music. Started writing again, making and selling art. I am now single and I am not “healed”. But I work with my shame about herpes every day. I learn self care every day. Your words, ELLA, are so true and so real. And as a person who has also risked much and gone through excruciating self exposer locally about incest (another taboo) I deeply respect your work. It is inner work and I have done the same. With much respect, care, and thanks, Chrys

  21. Reading your posts made me cry. I was diagnosed nearly 2 years ago and only just now realized I’ve spent this whole time punishing myself.
    Resigned to sitting in the corner and watching the rest of the world partner up and bear children, I pushed away the one love interest I really cared about. Assuming, as I’m sure many have, that I would be rejected and judged for my condition.
    I let this STI define me. Fuck that shit.
    Thank you, Ella, for reminding me that I am a person. I am not defined by this. That I can still live my life the same as before I was diagnosed.
    I’m going to embrace my life and own this shit.

  22. I Just Want To Say Thank You For Being The Voice I Love Everything That You Stand For And Everything That You Are Doing Thank You So Much Ella,

  23. Hi Ella, your work has helped me so much through my own diagnosis and I really love how informative you have been. Something has been bothering me today and I’m not quite sure where to go or who to talk to, but today on CNN a guest compared combating ISIS terrorism to treating herpes and this really upset me. I wanted to know your thoughts about this.

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