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Coming out herpes positive is one of the scariest things someone can do because of the wealth of inaccurate, stigmatized and hateful information that abounds about people who are living with herpes (HSV).
For each person who chose to share their experiences for this piece, there are thousands more who are filled with shame and are carrying that burden silently. We are sharing our stories now to reduce the fear and misconceptions that persist about those who are living with herpes so that you will know you are not alone.
Below, these folks, who are teachers, nurses, writers, activists, mothers, therapists, executives and more, are putting their real names and faces to answers to some common questions about what it's like to live with herpes.
What’s the hardest part about living with herpes?
The stigma. People do not disclose because there is a fear of rejection, ridicule, or bullying. That is how people are unknowingly infected. I shed many tears and have high anxiety when I have to disclose. ~ Rebecca, 38
There’s nothing really tough for me about herpes anymore except seeing other people suffer emotionally from it. Everyone should get to enjoy love and laughter in their lives, but because of the stigma there are many who unfairly feel like they're less of a person because of HSV. ~ Lucas, 46
Frustration, resentment almost, toward people who vocalize their disgust with STIs and engage in risky sexual behavior. I don’t believe in obligatory “safe sex” -- I absolutely support people doing what feels right to them as long as it's consensual. But it’s the double standard that gets me: people who perpetuate stigma while doing the very things that are most likely to spread STIs. ~ Sarit, 26
I get chronic outbreaks, so that's super annoying. For me, it's the prodromal symptoms that bother me the most -- particularly the nerve pain and the sore, achy quad muscles. My pregnancy was also tough, because I was really symptomatic. ~ Britni, 30
I don't find it difficult to live with herpes anymore. My outbreaks are very rare -- I’ve had two in two years. The hardest part was getting diagnosed in the first place and having to unlearn all of the terrible messages I’d internalized about STIs. Herpes isn’t a reflection of my character or a consequence of my behavior -- it’s a virus that a lot of people get because they happen to be sexually active. Forgiving myself was a long process. ~ Ella, 23
Have you experienced stigma from loved ones?
My current partner is, ironically, the only person since my diagnosis who hesitated to be intimate with me. We had a lot of talks, worked through a lot of things to come to a place of mutual understanding and comfort. It didn’t hurt at first -- I saw it as a lack of information and a situation that could be rectified. Only later on did it hurt to think back on the stigma I experienced from someone I'd become so close to. ~ Sarit, 26
The friends I told in confidence called me a slut and a whore, and they proceeded to tell guys that I was intentionally trying to infect as many men as possible. When I launched TheSTDProject.com, family members called my employer to try to get me fired. It wasn’t until I had been an activist for a couple of years that I realized I neither deserved that kind of treatment, nor were those people ever my “loved ones.” ~ Jenelle, 33
I called my family in Germany and basically put them on a conference call, told them all at once, and then I hung up. I found out later that Germany has a high rate of herpes infections, and for them it was a non-issue. Then I posted a link to a resource on my Facebook page, like a PSA. I got a lot of positive responses and a lot of private messages from people that had herpes too and who had never told anyone. So, now I know about all of the people in my group of friends who have herpes, but none of them are out, so they don’t know that they all have it. ~ Anja, 51
When I was diagnosed, I had been dating someone for a few weeks. He was furious, called me all sorts of horrible names, and accused me of cheating on him. Even though he didn’t break up with me, it became a card he could play every time we had an argument. If he stood me up, it wasn’t his fault; I was the one with herpes, and I should be grateful he hadn’t left me. Eventually, I realized I deserved better than to be emotionally abused like that and ended the relationship. ~ Ella, 23
Has your dating process changed since you were diagnosed?
For three years I didn’t date outside of the herpes+ community, because I was having constant outbreaks, and I didn’t want to take the risk. For me, it was just a rational decision about what risk I could accept and making sure a new partner was making an informed decision. I want to be able to say, I am doing all I can to protect a new partner. ~ Anja, 51
I am much more assertive and straight-forward about what I want and how I feel. I’m much more honest about everything - and my relationships are healthier and more fulfilling as a result. ~ Sarit, 26
I'm more stringent on who I have sex with without protection. I typically require a full STD panel plus an HSV IgG test before not using protection. I prefer to date someone who already has some form of HSV so I’m not personally liable for spreading it and\or having to worry about protecting someone who doesn’t have it. ~ Christine, 44
Sex requires a conversation first now, but I think that’s dramatically improved my sex life and the type of relationships I have. ~ Ella, 23
The first time I disclosed to someone that relationship ended. There were a lot of women who were very interested, but they wouldn’t have any physical contact with me – they wanted to be kissing friends only – those relationships ended, too. It definitely changed my process in the sense that I was committed to finding someone who was really OK with my status or someone who already had it. ~ Lance, 41
At the beginning I was really standoffish – I’d go on dates, and then I’d get to the point of disclosure, and I’d back out. After 4 or 5 years, I started telling people up front. That was when online dating became really popular, and I started telling people right away so I didn’t have to deal with telling them in person and the potential rejection. ~ Mary, 42
What has made living with a long-term infection and dealing with stigma easier for you?
Networking with great people I would have never met otherwise, and learning to slow down and enjoy life at a more sensible pace. Working with many people who are newly diagnosed has helped me understand people better in terms of their hopes, sensitivities, vulnerabilities, etc. ~Lucas, 46
Running a campaign to raise awareness. In the beginning it was an idea about a girl following the RocknRoll Marathon\Halfmarathon tour wearing a shirt to bring awareness to both HSV and HPV. With each city I raced in, I met others with the same condition(s) and attended support group meetings. ~ Christine, 44
I checked out Positive Singles initially to just get into the chat rooms and find other people who had the same experience. Knowing that so many of us are out there – in the beginning especially – how many people were coming from all walks of life, and that there was nothing true about anything that anyone was saying about people with herpes that was so helpful. ~ Anja, 51
A supportive partner and writing about it publicly. So many people have reached out to thank me for it, and I feel like I'm helping people, which helps me. ~ Britni, 30
Having found my life partner who is also HSV+ makes it a lot easier, so I don’t have to think about it daily. ~ Lance, 41
Being challenged to reclaim my selfworth in a society that says people like me shouldn’t love ourselves kind of highlighted just how little selflove I felt in the first place. I found myself writing about herpes and eventually publishing content about STIs for outside publications. Writing is how I process things and further my learning, so it’s been a huge tool for me in embracing my status and understanding myself. ~ Sarit, 26
If you could tell the world two things about you and living with herpes, what would it be?
I’m a real being with real feelings. Those jokes or snide remarks do hurt some days. Be mindful. I am still living life despite herpes! ~ Rebecca, 38
I’m just your average good-natured guy, in most ways. Like anyone else, I’ve got my strengths and faults, but herpes isn’t one of them. I believe in the ability of people to educate themselves beyond their prejudices and make things better. No one should feel isolated or ashamed over herpes, yet it’s painfully common for the newly diagnosed to become suicidal. We should educate each other more and put the stigma behind us. I'd like to add that there are A LOT of people out there who react with great compassion when someone tells them they have HSV. ~ Lucas, 46
The people that judge and stigmatize you for it aren't worth having in your life anyway. If you're HSV+, I want you to know that you're wonderful just the way you are. Don't ever let anyone tell you otherwise. ~ Britni, 30
I’m not defined by my herpes; it’s not stopped me from having an amazing career, life, relationships, or children. I stayed in an abusive relationship longer than I had to because he tried to convince me that no one would love me or want me. No one needs to stay in a bad relationship just because you have herpes or because they’ve accepted that you have herpes. You just have to educate yourself and advocate for yourself. ~ Veronnica, 41
I’m exactly the same person that I was before I was diagnosed. If anything, I’m probably a better person, and my HSV status has nothing to do with who I am. In fact, I’ve accomplished more as a human being since being diagnosed than I ever did prior. It’s not that big of deal. ~ Lance, 41
I am more cautious about who I allow into my life now – I tend to gravitate toward more educated, non-judgmental people. Maybe that comes with age, but herpes set me on an early path to that. ~ Mary, 42
To learn more about Jenelle’s projectTo read more of Sarit’s work @suhreetTo read more of Ella’s writingTo connect with ChristineTo read more of Britni’s work @britnidlcFor anyone interested in being connected with a group for support, Lucas can be reached by email: firstname.lastname@example.org.