In November 2011, in the course of my research, I interviewed Katy, a 35-year-old white woman who was diagnosed with HIV in 2010 during routine prenatal testing as she prepared to give birth to her son. Though her salary was $120,000 a year, Katy faced the stark social implications of an HIV diagnosis. “My husband, my parents, one or two friends, and my doctors are the only ones that know,” she said. “To not be able to tell my close friends at work is devastating.”
Although there are protections against HIV discrimination in the workplace, the possibility of losing her job in this weak economy shapes how Katy manages her health. “I report directly to the president of my company, and I know how my company works,” she says. “There is a law against letting someone go for HIV, but there are 15 ways to let someone go without saying it. I am the main provider for my family. We just had a baby. What would I do?” So she works long hours, hiding the fatigue and the irritation to her digestive system—side effects of her HIV medications—in order to maintain her standing on the job. She experiences a great deal of isolation with respect to her health and is even reluctant to join a support group for HIV-positive women.
In my first post for this blog, I explained how economic inequalities leave some groups more vulnerable to HIV/AIDS than others. But less is known about the economic, health, and social experiences of middle-class women with HIV/AIDS. Since they likely possess more financial resources to address their diagnosis, we falsely assume that middle-class HIV-positive women experience few negative economic and social outcomes of the disease. Katy’s story challenges that assumption. It highlights the sense of isolation and economic vulnerability faced by many middle-class women living with HIV/AIDS. Protecting their jobs often means living in silence about their condition.
My research examines how HIV-positive women in Chicago like Katy address their financial needs once diagnosed with the disease. We recruited more than 100 HIV-positive women from various racial, ethnic, and socioeconomic backgrounds and interviewed them. In their own words during interviews and through our systematic observation, the project seeks to illuminate how being HIV positive shapes the financial and social contours of women’s lives. We are learning how these women find resources for medications and healthcare and cope with financial obstacles, move up in their careers, take care of their families, and pay their bills—all while managing a serious, long-term health condition. The goal of my work is to increase awareness of the successes and obstacles of women living with HIV/AIDS, illuminate how social and economic inequalities inform the AIDS epidemic, and point to strategies that help women to simultaneously take care of their economic resources and their health following an HIV diagnosis.
Making ends meet is something that many people grapple with, but HIV and other serious health diagnoses add another layer of complexity. The stigma and heightened economic fears can discourage people from seeking the social support and medical information that may help them better address their health. Silence becomes a popular coping strategy.
President Obama’s National HIV/AIDS Strategy, calls for increased access to broad-based care to improve health outcomes for people living with HIV. An important piece of this is connecting people to networks and institutions that may provide continuous and coordinated social support alongside quality healthcare.
Too often, middle-class women are not fully engaged with this approach because of the economic and social implications of coming forward. Until we become attuned to the dilemmas that they face, not only do they lose potentially valuable support, but we forego the resources and contributions that women like Katy could offer in the fight against HIV/AIDS.
Photograph: Chicago Tribune