I recently sat down and spoke with Earlene Hayden, an HIV prevention specialist and outreach worker with South Side Help Center in Chicago. Over the course of our two-hour conversation, we laughed, cried and shared jellybeans. It was like catching up with an old girl friend. Earlene works primarily with sex workers, injection drug users (IDUs), and homeless women in shelters; and coordinates positive support groups. She also serves as the co-chair elect of the city's HIV Prevention Planning Group for 2001. We would probably still be chatting if her husband hadn't called to see how her day was going.
On Substance Use and Treating HIV
"The system, in many regards, is set up to fail. Why give HIV medication to a homeless person, who is still doing IV drugs? They ain't gonna stop doing drugs to take HIV meds on a regular basis. You have to arrest the addiction, then take care of the housing situation, then find out if they are ready for medication. What about the interaction of methadone, alcohol addiction, hep C, and HIV meds? There's a whole lot of work that still needs to be done."
On How HIV Silently Devastates a Community
"Let's say one person has a thing of water . . . we got high . . . we all shared it . . . as long as one person had a bottle of water and an outfit and a cooker . . . that meant that you could go cop, turn each other on, and didn't have to share with nobody in the shooting gallery. This bottle of water, say me and you use it, I get high with somebody else, then we bring in somebody else, so before the night is over more than 20 people been in that one bottle of water. But it don't end there. So long as water is in the bottle, you close it up, and start all over again the next day."
On Lack of Housing
"Where is an HIV positive woman with three children supposed to go? It [the lack of shelters for women with children] keeps a lot of them on the street. Many women will trade unprotected sex for shelter . . . with men who will put them out in the streets at three or four o'clock in the morning, if they don't trick with them, or all the other men in the house."
On the Road to Recovery
After years of hustling on the streets, using IV drugs and denying her HIV status, Earlene checked herself into a hospital for three days of care. A stranger in a restaurant gave her carfare to get there. While in the hospital a 28-day bed opened up, and she pleaded for the bed, because she knew that if she went back on the streets she would die. The doctor gave her the bed and told Earlene, 'You better not let me down.' Earlene took the bed, and she has been sober since -- eight years and counting. "I always wanted to be sober, but I was homeless and strung out for years." It wasn't until Earlene obtained sobriety that she was able to face the fact that she was HIV positive and then she began to treat the disease.
On HIV Stigma and Denial
"Women have a tendency to dress up their virus," to deal with the stigma attached to HIV/AIDS, according to Earlene. What she means by that is that T-cells and viral loads become weapons in certain situations. 'Girl, I got 900 T-cells,' a woman claims. 'So and so got AIDS, I ain't there yet' -- thereby distancing herself from others living with AIDS. Earlene believes that line of defense is a barrier that prevents effective treatment and education opportunities. "We are all infected. My virus is no different from yours."
Earlene observes that many women are also in denial about the status of their relationships and the sexual activities of their husbands or partners. "Women call [into the office] and say, 'I just tested positive. I've been with this guy for 17 years and he's been my only partner. I guess when I was younger, when I was promiscuous, I must have acquired HIV. They told me that the virus can lay dormant for up to 20 years. I don't want my husband to leave me. I don't know how to tell him, that I may have infected him.'"
To counter this line of reasoning, she asks clients: How many sexual partners have you had who have told you that they were an IV drug user, or bisexual? None. "I'm a living witness. When I was out there in the world, looking normal, getting high, I met men from all around the world. We'd do what we had to do, and move on. I didn't wear a sign that I was an IV drug user."
On the (Mis)education of Positives
The very basics of communication is a huge factor contributing to the confusion surrounding the disease, Earlene pointed out. A woman in a clinic recently asked Earlene if she was still HIV positive, to which Earlene answered, yes. "You still HIV positive?" the woman asked again, as if surprised. "Well, they told me I have AIDS and I just found out," she continued. "How come you still got HIV?" Here was a woman living with AIDS, who didn't understand the connection between HIV and AIDS.
It's an extremely difficult situation for an individual diagnosed with AIDS, which is the reality of most women that Earlene deals with. "They don't know what led them to AIDS. The doctor might say, 'You have 100 T-cells and 650,000 viral load' and in the same breath say, 'but we're not into numbers.' The damage is already done," Earlene explains. One of the many challenges Earlene and others in her field face is that they are encountering individuals living with AIDS on complex antiretroviral therapy, who really don't understand the basis of HIV and AIDS.
One of the most frustrating aspects of Earlene's work is the fact that when many women find out that they're positive, the doctors and clinics are through with them. In many instances there's no additional education. "They hand you a bunch of pills and expect you to be adherent. Everything is for the next person. We need more interventions for the positives," she states. "How is a positive woman suppose to live with her husband? Does she know how to take care of herself or her partner?"
On Temporary Setbacks
In January 2001, Earlene was rushed to the emergency room with a stomach ailment. "In the 13 years I've been positive I have not been sick. I never even had a viral load," Earlene recounts. In this instance, she went to the emergency room, where all her confidentiality was broken.
While Earlene was left waiting in the emergency room in severe pain, the paramedics were running around and yelling that they had "an HIV positive African American woman," and as she remembers, "all the other people in the waiting room started scrambling to get as far away from me as they could."
Earlene was misdiagnosed with a pelvic inflammatory disease (PID) in the ER. Two weeks later when she saw her primary physician, Earlene discovered that a cyst had ruptured. For two weeks she was taking antibiotics that in her words, "were tearing down my immune system." No ultrasound was performed in the emergency room.
What's a person to do? "We go to the doctor. We tell the truth [about our HIV status]. We get mistreated. We go to the doctor. We lie. We take a chance on them killing us. It's a no-win situation, but it's what we fight so hard for."
On HIV and Menopause
"We need to have some more information on this. When a woman is going through menopause a lot of hormones, estrogens and things are changing. We don't know what it is. Is it a side effect of the medication? Or are we really going through menopause? A doctor told me two, three years ago that I was going through menopause. I wasn't. Thyroids give off the same symptoms as menopause. Hot flashes. Sweating. Irritability. We need some clearer guidelines for women. There are so many restrictions on placing women in studies [clinical trials]."
On the Necessity for Preventive Care for HIV Positive Women
"Overall, across the board, regardless of race, women suffer from a lack of care . . . some women have never even had a pap smear or a mammogram. MRIs should be a part of a regular yearly examination. We all should take an MRI . . . that should be implemented into primary care . . . because things are coming now [side effects from long-term HIV antiretroviral therapy]."
Although Earlene has been an AIDS advocate for years, it wasn't until 1996 that the reality of living with HIV hit. "It wasn't until I had to start medication myself that it hit. I really did have HIV. It was a wake up call. Women have to pay attention, you have to take care of yourself, eat right, dress right."
Earlene learned early on that the best tool for living a healthier life with HIV is to empower oneself. "Educate yourself on the disease. Women need to come together. Stop isolating ourselves. We are all dealing with similar issues. We need to take control of our lives." Indeed.