Talking About Being HIV-Positive

Whether you’re newly diagnosed or have known for a while, telling people that you’re HIV-positive can be hard. You may worry about how others will react or if they’ll treat you differently.

But sharing your HIV status is important. Your friends and family members provide the support you need, says Marguerita Lightfoot, PhD, director of the Center for AIDS Prevention Studies at the University of California San Francisco School of Medicine. They relieve the burden of keeping a secret and give you a shoulder to lean on. Or they can help with physical tasks, like giving you a ride to the doctor’s office.

Most of the time, choosing who to tell is a personal decision, Lightfoot says. You have control over how and when you share the news.

Who Do I Have to Tell?

In many states, you’re legally required to tell those with whom you may exchange bodily fluids, such as sexual partners. The rules vary by state and, in some cases, there’s federal regulation. So you may want to check with your doctor or social worker.

  • Sexual partners. You should tell any sexual partner before you have oral, vaginal, or anal sex. You should also inform past partners within a reasonable time fame, says Jeffrey T. Kirchner, DO, chief medical officer for the American Academy of HIV Medicine. “Your doctor can guesstimate roughly how long you’ve had HIV.”
  • Needle-sharing partners. If you’re a drug user, you should disclose to anyone you share needles with.
  • Blood, tissue, organ, or semen donation staff. You should share your HIV status before you donate. In some cases, it may not be allowed. For example, anyone who has ever tested positive for HIV can’t donate blood.
  • Doctors and dentists. Informing your health care providers allows them to give you the best care. For instance, they won’t prescribe medications that could interact with your HIV drugs. Health care professionals are bound by privacy rules. They aren’t allowed to share your HIV status unless not doing so would result in harm to another person. Some states require you to tell a doctor or dentist before they treat you, so you should find out what the laws are in your state before you get any health care service.

You don’t have to tell your boss or co-workers, Kirchner says. The exception is if you have a job that may expose others to the virus, such as a surgeon.

Along with your doctor, you should tell also your mental health care providers, such as a therapist, Lightfoot says. They can help you deal with the emotional impact of an HIV diagnosis.

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Who Should I Consider Telling?

The next step is to decide who else you want to share your HIV status with, such as trusted family members and friends. Write down a list of people you’re thinking about telling, Lightfoot says. “Each person has their own set of circumstances,” she says.

Ask yourself these questions about each person:

  • Why do I want to tell this person? You may not want to keep a secret from someone. Or you may worry that they’ll find out about your HIV status from someone else.
  • What do I hope to get from this person? Think of what you might want from them, whether that’s emotional support or a helping hand.
  • What do I want to share about my HIV status? Decide what details you want to reveal and how you’ll answer potential questions.
  • How do I expect this person to react? Some people won’t respond the way you think, but it’s a good idea to prepare yourself.

What Resources Do I Have?

You may decide to tell people on your own. But there are also resources that can help.

State and local health departments offer partner services free of charge. They’ll tell your sexual or needle-sharing partners that they’ve been exposed and need to get tested. Your doctor or social worker can put you in touch with a partner services health counselor.

Usually, you’ll decide how you want to disclose the information.

  • Anonymous third-party notification. A health counselor reaches out to your partners. Your name and identity aren’t shared with them.
  • Dual disclosure. You’ll talk to partners with a counselor.
  • Self-disclosure. A counselor helps you prepare and practice, but you’ll tell partners on your own. The health department follows up so that they can get tested.

You can also work with your doctor. “I have patients bring in their loved ones to my office to disclose their status,” Kirchner says. “It’s helpful because I can share medical information face-to-face and answer any questions.”

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What’s the Best Way to Share the News?

It’s often difficult to tell people about your HIV-positive status. But there are some steps you can take to make the conversation go more smoothly.

  • Find a safe space. Plan on speaking in a quiet area where you can have a private conversation. If there’s a chance of a bad reaction, talk in a place where you have space but other people are nearby, such as a park.
  • Be straightforward and specific. Tell the person that you have HIV instead of saying that you have a chronic disease or virus, Lightfoot says. Then spell out what you want from the person, such as, “I need someone that I can talk to and loves me no matter what, and I hope that person is you. I need your support right now.”
  • Know the facts and have information ready. Sometimes people’s reactions to HIV is driven by fear and misconceptions. “Some people think that HIV is a fatal disease, when we know that it’s not,” Kirchner says. “Most patients do very well on treatment. It’s controllable.” You should be able to explain the basics about HIV and offer resources where they can get more information.
  • Be prepared for any reaction. You don’t know for sure how someone will respond. “It’s going to hurt emotionally if someone you love reacts badly,” Lightfoot says. Think about how you’ll cope with those feelings. “Know who you’re going to talk to about it, whether that’s a therapist, counselor, or another friend,” she says.
  • Consider taking a step back. You may have to give the other person time to process the news. “You can check back in with them,” Lightfoot says. “Or they can come to you when they’re ready.” In some cases, you may need to reconsider your relationship, she says. “Think about what you wanted to get from that person, and if it’s worth it.”
WebMD Feature Reviewed by Jonathan E. Kaplan, MD on April 29, 2020

Sources

SOURCES:

CDC: “Partner Services.”

FDA: “Important Information for Potential Donors of Blood and Blood Products.”

HIV.gov: “Talking About Your HIV Status,” “Should You Tell Other People about Your Positive Test Result?”

Jeffrey T. Kirchner, DO, chief medical officer, American Academy of HIV Medicine; staff physician, Lancaster General Health Physicians Comprehensive Care.

Lambda Legal: “Privacy, Confidentiality, and Disclosure.”

Marguerita Lightfoot, PhD, director, Center of AIDS Prevention Studies, UCSF Medical School.

Virginia Department of Health: “Partner Services.”

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