Almost Everybody Has It, So Let's Talk About It

Breaking the stigma of of herpes by people who wanted to share their stories

December 7, 2020

AUSTIN –– Sexually transmitted diseases have held a harmful stigma for a long time, even though they are common. Lately, everyday people are trying to change the damaging reputation of herpes.

The Center for Disease Control states that herpes is a sexually transmitted disease that is actually caused by two viruses, HSV-1 and HSV-2.

Oral herpes which causes cold sores on and around the mouth, is caused by HSV-1. Oral herpes can cause HSV-2, which is genital herpes, by oral sex.

Many people contact herpes as a young adult or child through saliva according to the CDC.

While there is no cure for herpes, several medications can be taken daily like Valtrex and Valacyclovir, as well as the herbal supplement Lysine to help prevent outbreaks and transmission of the disease.

The CDC estimates that every year there are approximately 800,000 people who contact herpes.

For some, there is a substantial amount of guilt and shame that comes with having herpes. For something so common and considerably easy to manage, many people with herpes feel alone. This can often take its toll on mental health and relationships.

Devin Lowden, 29, logistics manager, Austin, TX.

“When I first got it I was like, “Oh my God, I’ve never had this before, I don’t know where I got it. I was living at my moms house and I wasn’t even promiscuous.

Lowden thinks the first contracted herpes from a family member, “I think I was 18 or 19 when I first got a cold sore on my mouth.”

For sexual partners, “If it’s going to be somebody on an app, I usually don’t tell them because I’m not breaking out and if I have sex with somebody 90% of the time it’s safe (sex).”

The stigma affects people differently, Lowden doesn’t allow it to define him. “It doesn’t hold me back unless I have a breakout and then I’m like “Fuck my life for a week.””

“It could happen to anybody, the people who are making fun or like looking at me a certain way, it could happen to you.”

Emily Knight, 23, nursing student, Round Rock, TX.

“I remember when the nurse told me and I just started laughing and said ‘This is perfect, this is so awful, I hate my life,’ if I don’t laugh, I’m going to freakin’ cry. At first it was very isolating, it’s nice to know that a huge portion of the population has it. There’s so much stigma, it makes me so mad. Hopefully it’s different in the next 10-ish years, it’s something that no one talks about.”

Emily Knight contracted herpes at age 18 while visiting New Zealand.

“Usually when I was traveling I would always have condoms in my bag, for whatever reason that night I did not. I stood there for a second thinking, ‘Is this a good idea? I’m going to do it anyway’ and then we had sex.”

A few days later she went to Australia and started feeling sick, gums hurt really bad. Went to the dentist and they told her she had a bacterial infection. Cold sores appeared around her mouth so severe that she could barely eat.

“I didn't know what to do, it’s just so confusing. Thankfully it was just herpes,” said Knight.

She gets cold sores usually at the beginning and end of every semester from stress.

Knight told her mom who she’s close with, didn’t tell anyone else for a while. “I’m really thankful, I was humbled by it because I really thought I was hot shit.”

“I’m okay with it now.”

Courtney McGarrah, 30, server who now lives in Portland, OR.

“I was in the parking lot of the Austin Food Bank dropping donations when I got the call from the doctors office. My stomach dropped, I felt so sick and gross. I mean, I was only 21, I was safe. I used protection almost every time.”

One of the most difficult parts of having herpes is having to share it.

“No matter how normal and common it is, having herpes and having to share it feels shameful and hard,” said McGarrah.”

People with herpes often go through different stages of coming to terms with it.

“As hard as it is to tell people and worry about this judgement, my initial response to the news put me in a dark place and then herpes ended a huge relationship that I thought was the real deal,” said McGarrah. “It shakes your confidence for a while, herpes stopped me from dating and feeling safe sharing that part of me with another person.”

McGarrah didn’t feel comfortable sharing a photo.

Mijkil Jaguar, 45,Wellness Coordinator, Austin, TX

“I remember how I got it, I went to a sex party. First sex party ever, I was so excited. A week before I got a lip piercing in my bottom lip, it was fresh. I was not supposed to be kissing anybody. I was not going to let a little lip piercing stop me. As my luck would have it the first person I kissed was a really extreme masochist, she latched on to my bottom lip and bit it as hard as she could.”

Jaguar who has HSV-1 also contacted HSV-2 by oral sex, “I was staying with my sister at the time and every so often I would masturbate and I didn’t realize that if you use your saliva as lubrication you can give yourself cold sores down there.”

“The stigma is dumb, I feel like it's related to sexual repression and the resulting shame, sexual shame,” said Jaguar. “I have a little lip herpe right now. I was just with a guy two weeks ago, hottest man ever, and the next day I got this on my lip and I was like “Oh no,” so I told him, he said thanks for letting me know.”

Kelvin Lyons, 53, HVAC Tech and Landlord, Detroit Metro Area

First contacted herpes in 2004. Felt like “bullshit, depressed, sad and embarrassed” when he found out. “I suffered for months, then I joined a group and went to my first event. It was amazing. I could share and did not feel isolated.”

Kelvin Lyons said his dating life has been good and bad after finding out he had herpes. He has made some good friends and dated people from a herpes support group, but he is still too embarrassed and shy to disclose to anyone outside of the group for fear of being labeled.

The herpes group he attends has helped him deal with herpes emotionally. Being around his peers has helped to regain confidence and not feel as self conscious about it.

“My therapy is people like me.”

Lyons stopped responding after he was asked for a photo.

For these five individuals and many others, having herpes has changed their lives in various ways emotionally.

People with herpes often feel peerless, but there are multiple support groups likeH Werks and Austin H Friends, and several dating websites like HSVSingles.com and Positivesingles.com so people know that they aren’t alone.

SOURCES

1. Jaguar, Mijkil

2. Knight, Emily

3. Lowden, Devin

4. Lyons, Kelvin

5. McGarrah, Courtney

Austin H Friends https://www.meetup.com/Austin-H-Friends/

Center for Disease Control https://www.cdc.gov/std/herpes/treatment.htm

HSV Singles https://www.hsvsingles.com/?language=en

HWerks https://hwerks.com/texas-herpes-dating-hsv-support/

Positive Singles https://www.positivesingles.com/