According to the Centers for Disease Control and Prevention, an estimated 1.1 million people in the United States are living with HIV. In 2017, 38,739 people received an HIV diagnosis, and when they first heard the word “positive,” many were thrust into feelings of anger, sadness, denial and fear.
“There are some people who suspect they are HIV-positive but go a very long time without testing, and then there are other people who test for whatever reason and turn out positive,” says Mallory Johnson, a clinical psychologist and professor at the University of California–San Francisco School of Medicine and co-director of the NIH-funded Center for AIDS Prevention Studies. “Those tend to be the extremes of the experience.” Disbelief and shock, Johnson says, are the most common responses.
Of those living with the virus in the U.S., about 14%, or 1 in 7, are unaware of their infection. HIV weakens the immune system by destroying cells meant to combat infection and disease; AIDS is the final stage of the infection, when the immune system has been severely damaged. Not all HIV-positive individuals will develop AIDS — antiretroviral therapies and other medications now allow people with the virus to live long, healthy lives.
Still, receiving a chronic diagnosis like HIV is likely to produce emotional distress. Here’s a look at the toll such a diagnosis takes, as well as how patients can tend to their psychological health.
The Mental Side
In any given year, around 1 in 5 American adults will experience a diagnosable mental illness. And people living with HIV are at an increased risk of developing a mood, cognitive or anxiety disorder, according to HIV.gov. Depression, the most common mental health condition among the general population, is particularly likely among those who are HIV-positive.
Depression’s ramifications can extend beyond emotional health and cause physical problems as well, says Sheryl L. Catz, a clinical psychologist and professor at the Betty Irene Moore School of Nursing at the University of California–Davis. Often, depressed patients fail to stick to their medicine regimens as they should. “We did find across the board that people who were depressed had a more difficult time with their adherence,” says Catz, who researches HIV, health behavior and chronic disease management.
Peter Vanable, a professor and chair of psychology at Syracuse University, has conducted extensive research on the behavioral aspects of HIV and coping. He analyzed, for example, how HIV stigma affects mental health and medication adherence. “A significant subset of men and women who are HIV-positive experience social rejection from family, from loved-ones (and) from partners, and those experiences of discrimination and rejection can really play out in difficult ways,” Vanable says.
The way people react to news of an HIV diagnosis, he continues, can shape a patient’s long-term psychological response. “People’s experiences with social rejection, and people’s internalized feelings of self-rejection tend to go hand-in-hand,” Vanable says.
And it’s not just a patient’s mental state or how they’re thinking about or reacting to an HIV diagnosis that may be at issue. According to the American Psychiatric Association, HIV moves into the brain soon after infection. Once it’s there, it can cause complications, including central nervous system problems, dementia, pain and mood disorders. In response to this discovery, the APA established its Office of HIV Psychiatry, which looks to ensure appropriate mental health care for people living with HIV and AIDS.
No one coping strategy will best serve all patients, experts say. Still, patients should disclose their status to at least one trustworthy person, says Robert H. Remien, a professor of clinical psychology and director of the HIV Center for Clinical and Behavioral Studies at Columbia University. “I am a big believer (that), psychologically, it is important people not be entirely isolated with their HIV diagnosis, and they are not living entirely alone with it,” he says.
But who to tell — and when it makes sense to do so — is a personal decision. “There’s not a need for everyone to have everyone in their life know,” Remien says. “It’s a chronic illness, and people live with all kinds of chronic things that they may or may not talk about.” Johnson agrees that telling at least one person typically helps patients deal with the diagnosis in the healthiest way.
Though telling someone soon after the diagnosis is helpful, patients should remember that they’re in control. “We never recommend people disclose or not disclose — it’s something (they) have to work through, and they are the best judge of who is safe or OK to tell,” Catz says. “But we do see a tremendous burden lifted off people when they have a network of (supporters) who are aware of their status.”
Patients shouldn’t feel like they can only find support within their typical social circle, Catz continues. Organized HIV support groups are often beneficial, especially for those who don’t know other HIV-positive people. It can also be beneficial to reach out to people through online support groups and medical providers.
“It’s really helpful to connect people to services where they are able to feel open about discussing their status,” she says. “People sometimes join our studies who have never told anyone in their social network that they have HIV, but they have this need to talk about the issues they’re facing.”
Regardless of the medium, Vanable says initial support should ideally come from someone comfortable with open discussion: “Finding a supportive community of people who are well-informed and capable of being of help to someone who is newly diagnosed and coping with the disease is really key.”
He adds that professional support, like seeing a psychiatrist, psychologist or social worker, can also benefit people when they first learn they have HIV. “If people are having difficulties, and difficulties are quite common, seeking mental health services is absolutely appropriate and can be incredibly helpful.” Ask your health care provider for information about how to contact a local support group, a mental health care provider or visit HIV.gov for more information.
Advances in HIV Treatment
Though HIV infection is still something to be avoided and prevention is the best approach, life for people living with HIV is quite different now than it was even just a few years ago. “Whereas before, it used to be a death sentence, now, we consider it pretty much a chronic condition,” says Dr. Carlos Malvestutto, assistant professor of infectious diseases at The Ohio State University Wexner Medical Center. “Overall, the median life expectancy for people with HIV is the same as for someone without HIV, as long as they stay on treatment.”
Darriane Martin, manager of HIV prevention for AltaMed Health Services Corp. in Los Angeles, agrees that an HIV-positive diagnosis is a far different thing now than it was when the disease first emerged as a scary epidemic in the 1980s. “Nearly 40 years of research has revolutionized the HIV treatment and management landscape. Groundbreaking new treatment regimens have paved the way to scientifically rooted concepts such as ‘Undetectable equals Untransmittable.’ U=U means that people who are HIV-positive, receiving treatment and who have a medically undetectable viral load will not transmit HIV to their partners.”
That U=U proposition first gained traction nearly a decade ago, Malvestutto says. “This is one of the most exciting findings we’ve had. In 2011, we noted that transmission of the virus to anybody exposed to it by a patient with an undetectable viral load who was on treatment was so low it seemed to be zero. Subsequent studies — most recently the PARTNER trial, which followed couples where one had HIV and the other didn’t — tracked thousands of sexual acts without a condom. When we looked at the data, the transmission rate was effectively zero, as long as the viral load is zero and the HIV-positive partner is on treatment,” he explains.
Where once people shunned any contact with an HIV-positive person for fear of transmission from the slightest touch, now it’s possible to have a sexual relationship with an HIV-positive partner without transmitting the virus, provided those treatment and viral load conditions are met. “This has huge implications for public health,” Malvestutto says. It’s not a cure, “but it does mean that we have the tools to end the epidemic.” While practicing safe sex all the time is always a smart option, these findings offer hope that the further spread of the disease can be curbed.
The key point is that the antiretroviral therapies being used today have completely changed what it means to live with HIV, but knowing your status and getting that treatment is critical. Disparities in access to health care continue to be an issue in advancing these goals, particularly among certain populations across the U.S., but Martin says no matter your work, housing or health insurance status, it’s important that you seek treatment. “HIV medical care is available to you, even if you are uninsured, underinsured and/or don’t have income,” Martin says. “There are programs to assist those who are undocumented (immigrants) as well.”
Seeking help, especially if you’re struggling with the psychological effects of HIV, is critical both to your own survival and your chances of infecting others. Martin says that many treatment teams understand that “sometimes factors such as housing and/or financial instability, untreated behavioral health concerns, substance abuse disorders and so on may also impact a person’s willingness to seek out or remain in medical care.” Treatment teams typically are compassionate and caring and will go out of their way to remove “barriers to address these needs as well.”
Aging With HIV
HIV.gov notes that “at the start of the epidemic more than 30 years ago, people who were diagnosed with HIV or AIDS could expect to live only 1-2 years after that diagnosis. This meant that the issues of aging were not a major focus for people with HIV disease.”
However, huge advances in the treatment of HIV mean that many more people with the disease are living much, much longer — long enough, in fact, to encounter some of the same chronic diseases of aging that people without HIV typically face later in life. The CDC reports that 25% of all Americans living with HIV are aged 55 or older.
Malvestutto notes that there are still some unknowns about how people age with the disease. “Very soon we’re going to be at the point where more than half of our patient population is over the age of 50. There are some long-term complications related to living with HIV, even with completely suppressed virus.” These complications include a higher risk of:
— Lung disease.
— Neurocognitive decline, including deficits in attention, motor skills, language, memory and other cognitive functions.
It’s believed that the virus causes increased inflammation throughout the body even when it’s suppressed. Excess inflammation is a key component in the development of many chronic diseases. More research is needed to unlock the mystery of how HIV affects the body over time, but Malvestutto says “we’re working to reduce the rate of these complications so people can live not just longer but healthier lives.”
More from U.S. News
Update 08/23/19: This story was originally published on an earlier date and has been updated with new information.