Patrice Dean must cope with AIDS–and menopause. That combination is unknown territory. Dean, 49, was diagnosed with HIV eight years ago as a result of 28 years in a world of heroin, crack and prostitution.
Now she’s part of another subculture, the isolated world of HIV/AIDS, in which she must grapple with the virus, the side effects of medications, the “stigma and fear” on the part of others who believe she’s “a bad person” and somehow deserves to have AIDS–and menopause.
“I feel the aging process coming on,” she said. “It probably comes on a little sooner for us. We forget a lot. I think that’s a combination of age and the disease.”
Her bones hurt, and a year ago she was diagnosed with osteoporosis, a known side effect of some of the medications, and “degenerating joint disease.”
She is also taking antidepressants and anti-anxiety medication, which she said cloud the mind. She blames the anti-retroviral drugs for everything. “They’re not normal for the body. They’re potent. They have to be destroying things.”
The anti-retroviral medications affect the liver, especially in women, and raise the level of fats in the blood, thus increasing the risk of heart disease, said Dr. Pat Garcia, director of the Women’s HIV Program at Northwestern Memorial Hospital. Some can impair sleep, cause headaches, nausea and diarrhea, and abnormal tingling sensations in the hands and feet. “They’re not a panacea,” Garcia said.
The success of anti-retroviral drugs in extending life means that a whole group of HIV-positive women, like Dean, are passing into menopause.
“Will changes in hormonal structure have an effect on immunological issues that women are going through because of their HIV?” asked Dr. Mardge Cohen director of the Women and Children’s HIV program at Cook County’s Ruth M. Rothstein Core Center. “We are in the process of [developing an] understanding of how menopause affects HIV.”
Lipodystrophy, a buildup of fat tissue around the waist and behind the neck, like a buffalo hump, is a somewhat disfiguring side effect from HIV medicine that seems to be common among older women. Dean does her best to camouflage it with loose clothing.
Dean has a matter-of-fact manner, with hints of a sauciness that probably served her well on the street and now at her part-time job at the Chicago Women’s AIDS Project, where she works as a peer advocate.
Peer advocates run support groups, help women learn the communication skills they need to navigate a thicket of doctors and services, and help them resist the tendency to drop out of medical care or not take HIV medications.
“One of the important things that Patrice does is make reminder phone calls to say, `We haven’t seen you in a while, what’s going on? Are you doing OK?'” said Cathy Christeller, director of the Chicago Women’s AIDS Project.
A resident of the Edgewater neighborhood, Dean, who is Caucasian, shares much of the experiences as many women of color who are at risk of contracting HIV.
A Seattle native, Dean was abused sexually by her stepfather. At 15, around the time her adoptive mother and stepfather split up and she told her adoptive mother about the abuse, she turned to drugs as a painkiller. After high school, she got a job as a topless dancer. She remembers her mother telling her, “If you’re going to do that, you might as well start prostitution and really get paid for it.” She took the advice. It was good money to support her drug habit.
Studies show that sexual abuse is often linked to alcoholism and drug addiction in women. Female drug addicts often turn to prostitution to pay for drugs, and either activity can be a gateway to HIV.
Dean hopped a bus to Chicago to get away from her pimp. A sympathetic singer in a Chicago blues band that played in Seattle offered her a place to stay here. She stopped taking drugs and lived in suburban housing he arranged for her for six months before gravitating to the South Side, where she resumed using drugs and all that came with it.
She remained lost in what she calls a “mirage” of heroin and crack cocaine for a total of 28 years. The junkie’s habit of sharing needles and trading sex for drugs doomed her. She had several bouts of pneumonia in the mid-1990s, and doctors in the hospital repeatedly asked her to have an HIV test, but she wouldn’t do it.
The next bout of pneumonia in 1996 was so severe she had to be tested in order to get medication. Still she was in denial about being HIV-positive and kept smoking crack. She felt ashamed and would worry that people on the bus could tell she had HIV.
Dean bottomed out. She had been homeless on and off for eight years. When she became homeless for a week in 1999, it was the last time. She told God she wanted help, started treatment, went back to church and dealt with the sexual abuse and all the other issues.
Now she is working on a college degree bit by bit. At Core Center, Dean participates in a federally funded research study of which Cohen is principal investigator.
The study monitors HIV-infected women and uninfected women every six months. It includes an interview, examination and laboratory tests. The purpose is to understand better the progression of HIV in women, andto follow the effectiveness of anti-retroviral treatments.
Dean said her participation in the study is another way to help other women with AIDS and improve their care in the long run.
She has become active in EASE, a Chicago area HIV/AIDS caucus whose mission is to ease the pain, frustration and stigma associated with the virus.
“I decided the only way to change negative attitudes about HIV/AIDS was to be open and honest and in the hope that others would not feel they are alone and could speak out,” Dean said.
