To Tell or Not? Disclosure Should Be Made to Measure

Deciding to tell someone your HIV status can be nerve-wracking. It's a double-edged sword that can help you, but it might also hurt you.

The benefit of disclosing to your loved ones, of course, is the chance to gain their support and a sense of relief and freedom, both good for your health. By not telling, when you would like to, you may increase your sense of burden and isolation.

Among the risks is rejection. Worse, people may repeat your disclosure to others, though in many places, disclosing someone else's status is against the law. Letting people know about that may help keep them quiet about your status.

As stated in the article "Rights and Wrongs," you don't have to tell anyone, except for sexual and needle-sharing partners. That's the law in most of the 50 states and territories, and the District of Columbia.

Remember that you can take steps to protect yourself if you feel that disclosure might put you in harm's way or that having a witness could be beneficial. You can ask a friend or other advocate to accompany you. In addition, your local public health department can contact your sexual and needle-sharing partners to tell them they may have been exposed to HIV, without naming you.

"When you first get diagnosed, I recommend telling one or two close friends," said Kristin Keglovitz, P.A., medical director of Howard Brown Health Center in Chicago. "I've never had anyone regret telling a couple of close friends, but I've had many patients who've told me, 'I regret telling as many people as I did.'"

Keglovitz has role-played disclosure with dozens of patients. "I tell people they should be prepared for the worst reaction," said Keglovitz. "Prepare yourself for those who reject you, even when you expect support. Prepare yourself for people who need to take some time, who can become supportive after some education and awareness. Practice so that you're not totally devastated."

Keglovitz refers patients with intricate legal questions to the AIDS Legal Council of Chicago (ALCC). She said her patients usually wonder if they have to tell their employer about a new HIV diagnosis.

"There's fear of not knowing their rights, of wondering if HR [human resources] can tell their co-workers." She points out that Illinois is an at-will state, where employees can be fired for any reason, or no reason at all. "I have some patients who did disclose and sure enough, their jobs evaporated a few weeks later.

"There's no reason to disclose if you're not putting someone at risk," said Keglovitz. "I've had a lot of people who work with children, such as teachers and care providers, ask if they need to disclose. They don't." On the other hand, when someone needs a medical excuse for being absent from work, it must note that the absence was HIV-related.

The Center for HIV Law and Policy (CHLP) produces a manual on HIV laws, including cases in which people with HIV can be imprisoned, such as biting or spitting, despite the nearly-zero risk of transmission. In addition, time can be added to certain convictions, such as prostitution, when the defendant is HIV-positive. And in states where there is no HIV-specific law, such as Connecticut, people with HIV can still be charged with reckless endangerment and/or aggravated assault.

Last year, CHLP established the Positive Justice Project to combat HIV-related stigma and discrimination in the legal system. The project's goal is to repeal laws that create HIV-specific crimes or which enhance penalties for HIV-positive people convicted of criminal offenses.

"You're required by law to tell your partners before engaging in sex, and that's regardless of using a condom or not," Keglovitz notes. "I recommend that people tell their partner first, before sex, because it's going to be a lot harder later."

You can learn more about disclosure and other legal issues at the CHLP website.