Jasmyn Gaggiano, now 23, remembers the debilitating shame that accompanied her genital herpes diagnosis as a queer teen. Four years after becoming sexually active, Gaggiano received her diagnosis. Their experience speaks to an even greater issue of STI stigma and its widespread impact. Genital herpes is the most common sexually transmitted infection (STI). It is known that either herpes simplex virus type 1 or type 2 can cause it.
In a phone interview, Gaggiano explained that her symptoms were debilitating, often leaving her bedridden. An objection from a nurse led to the first suggestion that her symptoms could be connected to herpes. This began an odyssey marked by alienation and fear of stigma. Her diagnosis darkened her spirit, and it took her two years to lift that cloud. Throughout that period, she felt alone, only able to share her diagnosis with her mother and grandmother.
Despite living with a rare disease, Gaggiano founded the community that would encourage her to share her story. She hoped to raise awareness about her circumstances and motivate others to advocate for change. Since then, she’s been hearing from more than 200 people. They called because they wanted to tell us their own struggles with these same conditions, shedding light on the enormity of the crisis faced.
Understanding Genital Herpes
These myths around genital herpes contribute to a sense of shame and isolation for people that live with the virus. As Dr. Gino Pecoraro—an influential and respected medical professional—pointed out, genital herpes was extremely common. He noted that it could be a lot more widespread than most people think. Due to stigma surrounding the condition, many people feel unable to be diagnosed or find community support.
“It’s hard to get an accurate incidence rate because a lot of people just suffer in silence and don’t necessarily go and get it diagnosed or let people know that they’ve got it because of a stigma associated with it,” Dr. Pecoraro noted. This silence only continues the cycle of ignorance and alienation that so many still face.
Genital herpes can be transmitted through different routes, such as from an asymptomatic carrier or during childbirth. Additionally, HSV-1, usually responsible for cold sores, can in fact cause genital herpes when passed through oral sex. This muddies the waters in the narrative around who is at risk and how the infection spreads.
The Personal Impact
For Gaggiano, the emotional weight of her diagnosis hit hard. She kept it under wraps for years. Finally, she opened up to one friend — who had genital herpes. This particular conversation was a turning point for her. The connection it created helped her to not feel so alone in what she was going through. “It did allow me to not feel like I was the only one,” she said.
At first, Gaggiano believed she would be able to hide her diagnosis because she had a boyfriend. But when their relationship ended, the reality of having to disclose her condition sank in and hit her hard. “I was like, ‘Well, I don’t need to tell anyone. I’ve got a boyfriend,’” she recalled. “And then we broke up and it sort of just hit me like a truck… I was like, ‘I’m going to have to tell people now.’”
The fears that held her back from disclosing her diagnosis were deeply rooted and heart wrenching. “I thought, ‘Everyone’s going to find out. No one’s going to want to be friends with me. No one’s going to ever want to love me,’” she stated. It’s a common feeling for anyone diagnosed with an STI to feel this way. This demonstrates the critical need for more awareness and honest conversations surrounding these conditions.
Moving Towards Education and Support
Gaggiano is now using her growing platform to educate and inform others on the importance of breaking down the stigma that surrounds genital herpes. She is convinced that honesty and brutal, transparent discussion about everything are truly the best forms of education and support. It’s just a huge cycle and it will not stop until we address it and we educate ourselves,” she declared.
Prior to this outbreak, she had controlled her condition by seeing her GP in advance of outbreaks to obtain medication. Luckily, those outbreaks weren’t the norm. Thanks to Gaggiano’s proactive approach, she was able to take back some control over her health and inspire others with her journey along the way.
Gaggiano continues to raise awareness and promote ongoing dialogue about genital herpes. She hopes to empower others who are stuck in darkness because of stigma to speak out. Her story is a reminder of how community support and understanding are key in helping our friends and neighbors overcome personal challenges to improving health.
