Living with Herpes:10 Things to know, from who has it
November 1, 2019
I am a woman living with herpes. And while common stigma has taught us to think of herpes as "gross," that's far from the case.
Sure, flare-ups feel like fire and make you feel gross. But I know that I’m not gross. I got the infection from a man I loved and trusted, who swore on his life he had tested clean for any sexually transmitted diseases. Yet ... he still managed to give me herpes. Now, that is what is gross.
I don’t know exactly when I was infected — it’s impossible to tell. But I know when I experienced my first outbreak. I awoke with a fever and everything hurt, especially my crotch. It was as though I was straddling boiling, spiked coals, and simultaneously being penetrated by a lava-slathered drill.
When I got myself to the nearest clinic, the nurse practitioner said it was a mosquito bite. Inside of my vagina. But she tested for STDs, just in case.
Three very long and painful days later, the nurse called to apologize for the misunderstanding: My “bite” was actually herpes. She explained — amid my inconsolable sobs — that I had tested positive for herpes simplex virus 1 (HSV-1), which is also what causes cold sores on the mouth.
“Everybody has it! You probably got it from your aunt when you were little!”
I didn’t care. I didn’t hear her. I had herpes and I thought that no one would ever love me again.
The months following the diagnosis were the worst of my life. I fell into a deep depression and ate to ease the pain; I ended up gaining 35 pounds. I felt dirty and lonely. I was convinced I would be alone forever.
But I was wrong, on so many levels. I did find love again. And I wasn’t alone — very far from it, in fact. Herpes is extremely common, with statistics showing that as many as one in six people ages 14 to 49 in the U.S. has herpes caused by the herpes simplex-2 virus (and since herpes simplex-1 virus also causes herpes, that number is likely even higher).
Yet somehow, the stigma persists. And it’s baseless, fabricated, and entirely misleading. I didn’t, and don’t, have to feel this way, but society made me think I did. I was a sexually active young woman, and for that, I felt I was being rightfully punished.
And so I punished myself — avoiding men and the dating scene entirely. I found solace in isolation; I couldn’t face the inevitable conversation of having to admit that I had herpes. I thought I was disgusting, but I was not disgusting. I was simply unaware.
I am now in a happy, committed relationship with my boyfriend, who knows of my diagnosis and loves me just the same. I take my medication daily and he gets tested regularly. He hasn’t contracted the virus, and he doesn’t — and never did — think I was “gross.”
I survived, thrived and learned how to live with herpes — and if you find yourself with a herpes diagnosis, you can, and will, too. Simply stay safe and informed. And you can start here.
I spoke with Dr. Vanessa Cullins, MD, the vice president of external medical affairs at Planned Parenthood, to clear up some misconceptions about the herpes virus. It’s time to set the record straight: Herpes is not the end of the world. Read on for facts about this all-too-common STD and answers to questions about living with herpes.
How is herpes transmitted?
Herpes (both HSV-1 and HSV-2) is spread by skin-to-skin contact — which happens often through sexual contact or sexual intimacy, but can also happen during touching or kissing of a completely non-sexual nature, like from a parent to a child. Although rare, genital herpes can also be spread from a pregnant woman to her baby during vaginal birth.
Can you only spread herpes when you have an outbreak?
You should stop having sexual contact as soon as you feel warning signs of an outbreak. Warning signs may include a burning, itching, or tingling feeling on the genitals or around the mouth. Do not have vaginal, anal, or oral sex — even with a condom — until seven days after the warning signs stop or the sore heals. The virus can spread from sores not covered by the condom. It can also spread in sweat or vaginal fluids to places the condom doesn't cover.
How do you know you have herpes? What are the symptoms?
When a person has oral herpes, "cold sores" or "fever blisters" can show up on the lips or around the mouth. These sores may also show up inside the mouth, but this usually only happens the first time oral herpes symptoms appear.
Most people with genital herpes have no symptoms, have very mild symptoms that go unnoticed, or have symptoms but do not recognize them as a sign of infection. Genital herpes symptoms include blisters, sharp pain or burning feelings if urine flows over sores, an inability to urinate if severe swelling of sores blocks the urethra (tube from the bladder to outside the vagina), itching, open sores, and pain in the infected area.
What is a herpes "flare-up"?
When herpes flares up again, it is called a "recurrence" or "outbreak." Herpes does not always recur, and if it does recur, the timing and severity are different from person to person. Some people rarely have recurrences. Others have them often. Herpes is most likely to recur in the first year after infection. Recurrences may be more frequent for people with weakened immune systems.
You may have some early warning signs before an outbreak occurs, like tingling, burning, or itching where sores were before. The warning signs may start a few hours or a day or so before the sores flare up. When symptoms recur, they are usually not as severe as symptoms during an initial herpes outbreak.
What is the difference between cold sores and genital herpes?
Herpes is a very common infection caused by two different but closely related viruses (HSV-1 and HSV-2). Both are easy to catch, and they both remain in the body for life and can produce symptoms that come and go.
A person who has oral herpes can give a partner genital herpes by giving them oral sex. The reason for that is that both types of herpes can live on either part of the body (and also the eyes). So a person with one type of herpes can give another person the same kind of herpes on a different part of the body.
If I have herpes, but my partner and I use a condom, is it still possible for my partner to get it?
Using condoms between outbreaks will reduce the risk of transmission. The risk of transmission can also be greatly reduced if the partner with herpes takes a small daily dose of anti-herpes medication.
How do you test for herpes? Can you get tested for herpes when you aren’t experiencing an outbreak?
Only a health care provider can diagnose herpes by performing a physical exam and tests. A blood test can tell if you are infected with oral or genital herpes — even if you don't have symptoms. Health care providers can also confirm herpes infection by testing fluids taken from the sores. If you think you have herpes sores, get them checked out as soon as possible. Your local Planned Parenthood health center, many other health centers that test for sexually transmitted diseases, private health care providers, and health departments offer herpes tests and herpes treatments.
Is herpes curable?
Although herpes treatment is helpful, there is no cure. However, in most cases, outbreaks become fewer, less painful, and weaker over the course of a few years. If you have herpes, you can take certain medications to help manage the infection. Using herpes treatments is usually very effective in speeding up the healing of sores and preventing them from returning frequently.
How do you prevent herpes transmission?
Avoid touching any sores you have. If you do, wash your hands with soap and water. You should avoid sex while you have sores, and use a male or female condom or dental dam with your partner if sex occurs despite intentions to not have sex. Herpes is most contagious during an outbreak, but it’s also possible to spread herpes when no symptoms are present.
A good diet, enough rest and sleep, and effective stress management may help prevent herpes recurrences. If you have oral herpes, avoid getting sunburned.
Getting tested for STDs is a basic part of staying healthy and taking care of your body — like brushing your teeth and exercising regularly. Getting tested and knowing your status shows you care about yourself and your partner. STD awareness and testing is a basic part of staying healthy and taking care of your body. It’s important to know your risk and protect your health.
How do I tell someone I have herpes?
Try to stay calm and just be honest. It's probably not going to be the most comfortable conversation you've ever had, but there are a few things you can do to make the process easier:
- Be prepared for questions. Study up and know the facts (like the ones in this article) so you have the correct answers.
- Time it right. Find a time when you both will be able to give the important conversation your full attention.
- Always tell a potential partner before you engage in oral sex or intercourse.
- Try not to judge yourself. This is a health issue, not an indictment on your character.
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