For Daphne Cooper, getting an HIV diagnosis was less devastating than some earlier events in her life: “I was a victim of incest— by an adult male relative—from 12 until I was 18,” says Cooper, now 45. Those years of abuse destroyed her sense of self-worth and her ability to confide in or bond with people. In 2001, when she contracted HIV and sought support in a church group, “I didn’t feel received,” Cooper says. She felt alone, but she wasn’t: “Studies indicate that at least one third of people who are HIV positive have a history of sexual abuse,” says Kathleen Sikkema, PhD, of Duke University, lead author of a recent NIH-funded study on the subject.
It’s long been shown that adults who were sexually abused in childhood face a higher risk of contracting HIV later in life. Lisa Capaldini, MD, a San Francisco HIV specialist, explains, “The coping strategies that allow people to survive abuse include denial, depersonalization and not being in touch with their feelings.” These things may cause them to take risks that increase their vulnerability to HIV. Jay Paul, PhD, a researcher at UCSF’s Center for AIDS Prevention Studies, says numerous studies back this up. The studies show that sexual abuse typically leads to depression and an increased number of sex partners—both of which raise the risk of contracting HIV.
What happens, though, after people who have been abused contract HIV? How does the history of abuse affect their health and treatment? Sikkema’s study, coauthored with Yale’s Nathan Hansen, PhD, is one of the few concerned with those questions. The answers are sobering—but understanding them may be the first step to finding a way past the pain to a healthier life.
“For survivors of abuse who’ve been betrayed at a young age,” Hansen says, “it’s hard to trust people. That can make it harder to disclose their HIV status and get the help they need.” Lack of trust may interfere with talking to peers and getting the social support vital to physical and emotional health. Intense, lasting feelings of shame—common after sexual abuse—may keep people from seeing a doctor. “People might not take charge of their health,” Paul says, “because they think they don’t deserve to get help.” This thinking can also lead to skipping med doses. The impact of abuse is so harmful, Paul says, that people may accept HIV as “a slow form of suicide.”
Even for those who do seek out medical care, distrust can limit what they’re willing to reveal and discuss—and therefore undermine the help medical providers can offer. “In our research,” Sikkema says, “it was surprising to find that even some people who were in mental health care for HIV hadn’t told their counselors about their sexual abuse experience.”
For those who do talk frankly with their doctors, other problems persist. Because sexual abuse often causes people to tune out or disassociate from their bodies, they may fail to notice or report symptoms. Or medical exams and procedures might feel especially intrusive. For example, yearly or semiannual gynecological exams are critical for women with HIV. But because such exams can “reawaken the trauma,” Paul says, some positive women avoid them.
Support groups, attentive children and a nonjudgmental, sympathetic doctor helped Daphne Cooper replace self-loathing with affirmation. What inspires her to overcome? “I have to take this and do something with it,” she says. “My mission, my destiny, is to help others.”
For those in similar situations, emotional support is as important as medical care. Frank Spinelli, MD, of Manhattan’s Cabrini Medical Center, says he “automatically” advises HIV-positive patients with an abuse history to get into therapy. In his experience, “those who weren’t in a support group were the ones who fell out of treatment” and didn’t take their meds, he says, because “it’s a very heavy thing to have to carry alone.” The good news is: You don’t have to.
GETTING PAST ABUSE
Tips from Jay Paul, PhD, and Frank Spinelli, MD
- If you’re comfortable disclosing your sexual abuse history, ask your doctor for a referral to a therapist who has experience dealing with abuse—and, ideally, with HIV as well. If you can’t find a therapist who handles both, Paul advises choosing one with a sexual abuse specialty. “Someone with that sensitivity,” he says, “can learn about medical aspects of HIV.”
- If you’re willing to share with a group, look for one you can relate to—for instance, if you’re gay and male, seek out a support group of gay males. “This tends to be helpful in terms of isolation,” says Paul. “The group offers a sense of shared experience with other people—of not being the only one,” says Paul.
- Know that you’re not limited to the first therapist you see. “The patient should have control over deciding if a referral is a good one,” says Paul. “People with this history need to feel empowered.”
- If you’ve made headway in dealing with childhood sexual abuse, consider volunteering to help children in the same situation—it could be healing for you, too. This kind of giving back has been shown to work well for people recovering from drug abuse, says Spinelli. “It also works well with HIV-positive people, many of whom volunteer to counsel patients since they know what they’re going through.”
- Your local AIDS service organization can help you find an appropriate support group, therapist or place to volunteer. Use the ASO directory on poz.com to find one near you.