fbpx Life After Getting Diagnosed With an Incurable STI

Life After Getting Diagnosed With an Incurable STI

A sexually transmitted infection is not the end of your life, it's the start of a new one.
Hannah Shewan Stevens
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Hannah Shewan Stevens

"When I first got diagnosed, I thought this was going to plague my life forever," said Shoshanna Raven, a 29-year-old living with herpes simplex virus type 2 (HSV-2). "I had a 104-degree fever, nerve pain down my legs and there was water coming out of my vagina. I screamed, I was so distraught."

Across the world, more than 1 million sexually transmitted infections (STIs) are contracted every day, according to the World Health Organization. While most fall into one of four types—the sexually transmitted diseases (STDs) chlamydia, gonorrhea and syphilis and the STI trichomoniasis—millions of people live with an incurable STI.

The four incurable STIs, predominantly transmitted through sexual contact, are HSV-2, hepatitis B, HIV and human papillomavirus (HPV). Despite all four being manageable conditions, the stigma surrounding STIs, especially incurable ones, is embedded in the estimated 25 percent of Americans living with an incurable STI.

"The shame already hiding underneath the surface now had something to grasp on to," explained Raven, a leadership coach living in Denver. "You're already afraid you're not worthy or you think that people only like you because of how you are sexually, and then you get an STI that validates all of these old gremlin stories."

In 2018, the Centers for Disease Control and Prevention (CDC) estimated that there were 68 million STI cases in the United States and recorded 27 million new infections, with 45.5 percent occurring in young people between the ages of 15 and 24. Shattering the taboo to foster openness and encourage regular testing has the potential to limit the number of new diagnoses and prevent more people from being diagnosed with an incurable STI.

Editor's note: Some of the sources for this article requested their full names and locations not be used.

What are incurable STIs?

"Basically, the way to think about STIs is, generally, those caused by bacteria, you can cure, but those caused by viruses you have to live with and suppress: herpes, HPV, genital warts and HIV," explained Jeff Foster, M.D., a general practitioner in the United Kingdom. "We rarely consider genital warts or herpes as dangerous but they can be linked with other health conditions; HPV and cervical cancer, for example."

The word "incurable" often translates to "infectious" in people's brains, but incurable STIs are actually fairly easy to manage, which minimizes the chances of further transmission. Over 500 million people are estimated to be living with herpes worldwide. Many patients experience long stretches without symptoms before painful sores around the genitals or anus occur. By using antiviral medications that reduce outbreaks and the risk for transmission, herpes is treatable, but being cautious about spreading it to partners via skin-to-skin contact during a flare-up is still crucial.

There is no treatment available for HPV, which the CDC estimates affected 43 million people in the U.S. in 2018, but your body usually clears the infection on its own within two years. Treatments may be required to manage associated genital warts or cell changes in the cervix. Likewise, hepatitis B, which approximately 1.2 million Americans currently have, is often asymptomatic and the body usually processes the virus without treatment within a few months.

For people with access to the necessary health care, HIV is a livable condition, and with medication, patients can reduce the amount of virus in their blood to undetectable levels. However, 1 million people still die from HIV/AIDS each year and it remains one of the world's most fatal infectious diseases.

Unlike the devastating reality of a few decades ago, people with incurable STIs generally live full and healthy lives alongside them.

"Modern medicines are very good at suppressing the viruses and stopping people getting sick, but you just have to be more careful not to partake in sexual activity if the virus has a flare-up, due to the risk of spread increasing," Foster said.

"The reality is anyone who has sex can get infected," said Tricia Johnson, a licensed clinical social worker specializing in self-esteem and sexual issues in Illinois. "If you have recently been diagnosed with an STI, it may feel scary and isolating, but the facts speak volumes: You are not alone."

Impact of stigma

"My knowledge of being able to stay undetectable made me not worry so much about my health because I knew it was manageable, but it destroyed me to think about the stigma that surrounds it," said Rory Anderson, a restaurant manager in Penticton, British Columbia, who was diagnosed with HIV in 2021. "I just felt like no one would ever want to be with me and that I would be alone forever because of it."

Even with countless campaigns raising awareness of the progress in reducing HIV's death toll, the stigma endures, pushing many patients into hiding.

"Unfortunately, the damage stigma can cause to some people is immense," said Matt Webster, an HR business partner who experienced suicidal thoughts several times after being diagnosed with HIV. "It's a huge barrier to getting tested and puts a huge amount of shame on people that do get diagnosed with STIs, whether they're curable or not. We need to understand that sexual health is important and not something to be ignored or scared of."

Although a new diagnosis is always scary, accepting it and learning how to live with it, instead of denying or agonizing over it, can be life-changing.

"Once I'd got through the initial shock, and once I'd started to remove my own self-stigma, HIV has actually been a great influence on my life," Webster continued. "I'm more in control of my own health and more knowledgeable about it. It's really given me a new lease of life, after thinking that it would be immediately over."

Unless we tackle the stigma attached to discussing STIs, let alone contracting one, people will continue to live isolated by shame. And those who unknowingly have an STI may be deterred from getting tested and risk transmitting it further.

Empowerment through communication

Managing your symptoms and minimizing the risk of transmission are significant steps in the journey of living with an incurable STI, but learning how to communicate about it is equally important.

Choosing to be empowered by something that society insists is shameful is a daunting step to take, however, it has been transformative for many people living with an incurable STI. It also makes disclosing the condition to new partners so much easier.