The Difficulty of Disclosure

Living with HIV poses a variety of challenges. For many HIV-positive adolescents and young adults, the most difficult of these is not being able to disclose their status, Amy Leonard and colleagues reported in Perspectives in 2010. To explore barriers to preventing secondary HIV infection, the authors interviewed both youth and their providers, and found that stigma was a prominent concern among teens. As one pediatrician noted, HIV is “not like cancer, [where] at the convenience store there’s a picture of the child and they’re collecting donations.”

One young woman reported that a boyfriend had wanted to marry her until she revealed her status, at which point “he walked away.” Although few youth volunteered such negative disclosure stories, many said the prospect of rejection and gossip had caused substantial worry (“I thought I was sick,” one young woman said about the day she disclosed her status) or prevented them from revealing their status at all. This reluctance could be an impediment to the development of fulfilling romantic relationships, the researchers noted, as well as to consistent condom use. Other findings included the following:

• Among youth who discussed condom use, half said it would be okay to have sex with an HIV-negative partner if they used a condom, and one-fourth felt it would be acceptable to have unprotected sex with an uninfected partner as long as they disclosed their status beforehand.
• Most of the youth said that dating would be easier if the other person also had HIV. However, few seemed concerned about the risk of becoming infected with a different strain of the virus.
• Providers cited several strategies for encouraging HIV-positive youth to use condoms, including discussing the risks of other STDs, pregnancy and reinfection. Many recommended condom demonstrations. “Let them blow them up and play with them,” one provider suggested. “[Help them] see what they are and understand the importance of them.”

Perspectives on Sexual and Reproductive Health and Family Planning Perspectives may be accessed through Wiley Online Library (2003–) and JSTOR (1969–2011).

Cover illustrations of Margaret Sanger © Matthew and Eve Levine