Learning about possible exposure to HIV or considering telling a partner or family about sexual activity creates high anxiety for most people. Founded in 1989 and initially only a nightline because callers felt safest reaching out in the wee hours, the HIV Nightline now receives calls around the clock and responds to over 15,000 calls annually from all over the United States.
Lead Nightline coordinator Brad Chapin says many of these calls are from parts of the country with few sexual health providers. Apart from addressing isolation, conversations revolve around open sexual health education and about sexually transmitted infections.
“In our society, we are inundated with messages that our perceived value is based on our perceived sexual attractiveness. So rather than having public discussions about sexuality, people are shamed about talking about sex openly.”
The HIV Line provides a safe place for people to seek emotional support and is the longest-running national call-line for these concerns. The HIV Text line started in 2017 to provide an alternate form of support. Other SFSP call-lines include a Bay Area, a Central Coast, and a national suicide crisis line. All the hotlines support people in a mental health struggle and are open 24 hours a day, seven days a week. There is also a relapse-prevention line and substance abuse line, and many of the topics overlap across hotlines as callers cope with stress in different ways. Collectively, SFSP hotlines respond to over 70,000 calls annually.
Not getting treatment is worse.
The medical reality of HIV has greatly changed since the epidemic’s peak in the 80s and 90s. Nowadays, vaccines are being tested and treatments such as pre-exposure prophylaxis (prep) are far more effective. Some medications make HIV undetectable while also not suppressing the immune system. It is safer to have sex with someone who is taking treatments and doesn’t have a detectable viral load than someone who does not know they have HIV. “If undetectable, you are untransmissible,” Brad adds.
Transgenerational Trauma
Transgenerational trauma around fear of HIV is built into families, including fear of people who are different. Brad shared that when he came out as gay to his mother, she cried in grief for her relative who died from HIV and was scared that her son would meet the same fate. “People reflect on their experiences with family members.” Brad reflects that since he was born in 1990 at the height of the epidemic, “It is amazing how things have changed during my lifetime.”
People call to talk about all kinds of STIs they are terrified or ashamed to talk about, Brad said. “They are afraid of a potential reality: it’s an emotional reality. Almost all consequences are incredibly treatable. It’s not getting treated. That’s the problem. Being able to inform and address the anxiety has immense impact.”
Worst Case Scenario
On their first call, many people want to know their worst-case scenario. Many callers are married, closeted, or trans and are anxious or unable to talk about themselves.
Feeling safe and being able to talk to a non-judgmental call responder can be life-changing. The worst-case scenarios from HIV of brain damage and embarrassment only happen when people don’t get treated.
The practice of disclosing and communicating interpersonally about anxiety helps callers navigate other areas in their lives. Hotline volunteers use a behavioral and science-based methodology to understand the judgments, stigmas, and societal pressures on a person and then give them hard facts. Often, people are terrified by ambiguity, leading to fear of outcomes of death, humiliation, or social isolation.
Disclosure Tools
While there are no legal requirements for a person to notify partners of their status, tools such as the TellYourPartner.org platform make it easier to share the news without actually talking. It gives the steps to do a follow-up on getting the information too.
Full disclosure can help destigmatize HIV and encourage people to get tested and treated, but it can be a challenging space for some. “We cannot force people to disclose,” Brad says. “We help them consider and provide support. He adds that if the person one needs to tell cannot handle it, then perhaps question whether you should continue being in a relationship with them.
An additional technique called Exposure Therapy can help one interact with the world in a braver way. It helps a person who may have an unhealthy self-worth, such as presenting as obsessive-compulsive, navigate or work through practices that are normalized.
History, Pandemic, Past and Present
The HIV line was created when getting HIV was a death sentence. It was created and staffed by early members of the organization AIDS Coalition To Unleash Power (ACT UP). They also worked for more humane research in medicine, and much of their compassionate care and experiences learned from the HIV epidemic were applied by Dr. Fauci in the fight against COVID-19.
Working on the HIV Line has given Brad an earful of inequalities across the country. He adds that HIV is still a pandemic in parts of the United States, where mistreatment from racism continues to produce inefficiencies, waste, and suffering. Other callers are saddled with high treatment bills that would be covered if they lived in San Francisco (an option compromised by how costly it is to reside here).
The HIV line is always open, completely free, and its responders ready to listen and give counsel.
OPEN 24/7, EVERY DAY, EVERY NIGHT
Call (415) 434-2437 or (800) 628-9240 Nationwide
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