By Andrea Peirce
After your diagnosis, it's important to start building an HIV support network.
Hearing that you have the human immunodeficiency virus, or HIV, will change your life. In the moments after you learn about your diagnosis, you may experience a range of emotions, including anger, shock, sadness, or even denial. You may also struggle with depression.
According to the National Institute of Mental Health (NIMH), people who are HIV positive are twice as likely as people without the virus to be depressed. Compounding the problem, people with HIV may withdraw from their friends and family members in the hopes of hiding their status from others.
Finally, doctors at the NIMH and around the country now recognize that the virus itself can cause emotional, behavioral, and other mental health problems — and that some of the antiretroviral therapies, or ART, used to control HIV and acquired immunodeficiency syndrome, or AIDS, can trigger the symptoms of depression, too.
Coping With an HIV Diagnosis
One of the most important things you can do after an HIV diagnosis is start putting together an HIV support network.
Many clinics offer posttest counseling, in which a health professional or public health worker can talk with you about the HIV resources available to you, what steps you should take next, how to talk with current and previous sexual partners, and how to best care for yourself during this difficult time. At first, it will be hard to absorb all of this information, but if you find a way to focus, you’ll improve your chances of working out a treatment that’s best for you.
Everyone uses different coping strategies, and you’ll know that your approach is working when your feelings of distress and anxiety begin to dissipate.
“Where people get into trouble is if their coping strategies aren’t working and their distress persists,” says psychologist Mallory O. Johnson, PhD, a professor of medicine at the University of California, San Francisco. “Some people turn to very negative, harmful forms of coping — substance abuse is one. How people cope is central to how they function, and how they function is important to how they approach their HIV and get involved in their own treatment.”
In other words, the better you’re able to cope with the news of your diagnosis, the more likely you are to be successful with your HIV treatment.
Reaching Out to Others for HIV Support
Many people with HIV have a very hard time figuring out who to tell about their diagnosis. The best person to tell first, says Dr. Johnson, is someone whose response you can more or less predict will be supportive. Often these are people who have had a personal experience with HIV, but they can also be a close friend or coworker.
It’s important to find at least one person you can talk with about your HIV, says Johnson. “Just talking with someone can help alleviate emotional distress so you can become more problem focused,” he says. After you open up to at least one person about your diagnosis, find someone who can offer practical insight, including information about providers, clinics, treatments, and side effects. For many people, this means joining a local or online support group.
“If someone finds that they don’t know anyone living with HIV or they haven’t told people about their own HIV status, it can be very challenging,” says Johnson. “Try to get linked up with a support group if that’s an option. This helps to normalize the experience, to get a perspective from other people who are dealing with it.”
Note that in the United States, many states and cities have partner-notification laws. This means that if you test positive for HIV, you or your healthcare provider must tell your current or past sexual or needle-sharing partners about your status.
For help finding an HIV support group, ask your doctor or a social worker if they know of any nearby. Many people have luck finding help through Meetup groups for people with HIV or through faith-based organizations such as churches and synagogues.
Learning about the stories and experiences of other people living with HIV through recorded interviews and declarations can also be powerful and comforting — and make you feel less alone.
HIV, Denial, and Unhealthy Coping
Many unhealthy coping strategies can tempt you after your initial diagnosis — for example, using alcohol or illegal drugs, having unsafe sex, not getting treatment, or being in denial of your HIV status.
Getting past denial about HIV can be challenging. The problem is that people who are diagnosed with HIV are often afraid of losing friends and family because of the stigma attached to the disease.
“It’s very easy to be in denial about something where there’s a heavy stigma associated with it,” says Johnson. “Aside from the health consequences, there’s the societal aspect that makes it that much easier to avoid talking about.”
And while it’s fine to be selective about whom you tell about your status, Johnson says there is a moral obligation to let your sexual partners know that you have HIV. Your situation will affect how and when you do this, and post-HIV-test counseling is usually helpful in this regard.
“There’s not a one-size-fits-all approach,” Johnson notes. “Imagine a situation where a woman tests positive, and she’s in what she thought was a monogamous relationship with the same man for 10 years, compared with another woman who is a sex worker.” If you have concerns about starting this kind of conversation, talk with a friend or a therapist to get some help with the discussion.
After the initial shock of your HIV diagnosis, you may need to get some help with coping and building your HIV support network — both are essential to successful HIV treatment, so it’s best to get started as soon as you can.
Other Ways to Get Emotional and Psychological Help
If you’re HIV positive, it’s important to remember that you are not alone. There are many people, groups, and organizations that you can reach out to any time, day or night. Start with some of these contact numbers and websites, and see what feels right to you: