The Struggle of Women with AIDS
When Elizabeth Ramos, a clerical worker in Boston, turned 30 in April 1985, she felt weak and run-down. At first Ramos blamed her sluggishness on “getting older.” But during the next six months she grew increasingly short of breath and went for frequent medical checkups. Her physician diagnosed bronchitis, then asthma, and eventually suggested psychiatric treatment. Instead, Ramos dragged herself to Boston City Hospital. While admitting staff grilled her about whether she could afford hospitalization, her lips began to turn blue, and she was rushed to intensive care. Doctors determined that Ramos had contracted Pneumocystis carinii pneumonia, an opportunistic infection associated with advanced AIDS.
A divorcée of Puerto Rican descent, Ramos is virtually housebound these days in her low-income apartment in Cambridge. She moves with great difficulty and speaks in a monotone mumble. Ramos believes she contracted AIDS from sexual contact with a boyfriend who used intravenous drugs. They broke up in 1984, and he died in 1987. “I think he knew for a while that he had AIDS,” Ramos says. “But he didn’t tell me.”
Though still clinging desperately to life, Ramos is making preparations for relatives to take custody of her children, Chris, 8, and Matthew, 14. So far both sons have reacted to her illness by rebelling against her authority. “They have gotten out of my control,” Ramos says. “I try to be honest with them, but it is hard for them to understand I am going to die.”
Two months ago a jury awarded Ramos $750,000 for medical malpractice on the grounds that her physician, who knew that she had tested positive for AIDS antibodies, was negligent in not recognizing symptoms of her AIDS-related pneumonia. The defendant is expected to appeal the decision. “If I had been diagnosed earlier, I wouldn’t have suffered so much lung damage,” says Ramos, who may not live long enough see the case settled.
Ramos’ trial forced her to admit publicly that she had AIDS; most other women with AIDS suffer in private, fearing ostracism and reprisals against themselves or their children. “I can’t get up on a soapbox and tell everybody I have AIDS,” says Vicky, 37, a New York nurse from a middle-class white family. “I’ve told my family and a few close friends, but I’m afraid of being rejected by other people.”
As a medical professional, Vicky was aware earlier than most people of scattered cases of AIDS among homosexuals. But as a woman she did not think she was at risk when she dated a bisexual man in the early ’80s. “Believe me, when people started talking about safe sex a few years later, I was really informed,” Vicky says. “I even carried a supply of condoms in my glove compartment for my girlfriends when we went partying and warned them not to do anything stupid. Unfortunately, by then it didn’t do me any good.”
Bothered by skin rashes and low grade fevers for several months, Vicky began feeling deathly ill in January 1987. “Every day the doctors had a different diagnosis,” she says. “For a while they thought I had an abscess on my appendix. Then it was mononucleosis. Because of the strange symptoms, I thought I should be tested for AIDS, but my doctor advised against it. He said, ‘What would you do with that knowledge anyway? It would ruin your life.’ ” In May, Vicky learned she had a very rare form of tuberculosis. Concerned that her immune system had gone haywire, doctors finally tested her for AIDS. “When I tested positive,” Vicky says, “I thought, ‘Why me? I’ve always been a good person all my life.’ I felt like a leper.”
Having taken the experimental drug AZT since last August, Vicky has been in a stable condition except for bouts of extreme fatigue and a case of shingles in November. “That really threw me for a loop,” she says. “I thought, ‘Oh, my God, it’s going to be one opportunistic infection after another.’ ” She watches her diet, takes vitamins and tries to keep a positive attitude. “I realize there is only so much the medical profession can offer me,” Vicky says. “The rest has to come from within. I’ve always had a zest for life, and it has intensified now.” Unlike some women with AIDS, she is blessed with a supportive family who supplement her $532 monthly disability payments. “I’m spending my parents’ retirement income, and I don’t like that,” she says. “But it makes them feel good.”
Despite the odds against her, Vicky refuses to look upon her illness as a death sentence. Yet she cannot escape the lonely feeling of knowing that sexual relations are dangerous and that she should never bear children. “I didn’t do anything wrong,” she says. “I just cared for another human being and was a free spirit who figured if it felt good and hurt no one, then do it.”
Children have always been a great joy for Concepción, 35, a Hispanic mother of six, even at times when the men in her life have caused her heartache. A lifelong resident of Brooklyn, Concepción married at 18 but broke up with her husband nine months later. Her second husband was a “sweet and gentle soul” who, like many other men in the neighborhood, became involved with drugs. “I should have left him,” she says. “But I felt sorry for him. I hadn’t even heard of AIDS and had no way of knowing what he was doing would affect me.” Four years ago Concepción’s second husband was murdered during a drug transaction, and she married again, this time to a stock clerk who says he can’t stand the sight of needles.
For nearly a decade she has been taking medication to control a mild case of lupus, a chronic inflammatory disease. When the lupus flared up three months ago, doctors took blood samples, and she tested positive for AIDS antibodies. “When they told me, my first thought was, ‘What is going to happen to my kids?’ ” says Concepción, whose children range in age from 4 to 17. “I was angry at myself. But since I don’t use drugs, I never thought I would get AIDS.” It took a week to get up the courage to tell her husband. “I didn’t know if he was going to beat me or leave me or what,” she says. “He took it real hard. But he blamed everything on the lupus. He couldn’t deal with the idea of AIDS.”
A few weeks later, blood tests disclosed that Concepción’s husband and 4-year-old son have been exposed to the AIDS virus, although they have not yet shown symptoms of illness. “My husband refuses to even talk about it,” Concepción says. “Since he still feels healthy, he doesn’t see the danger. I rarely see him. He stays out late and then goes straight to bed. I am the backbone of the family right now, so I can’t stop to feel self-pity. I have to take care of the children as well as deal with the illness and the pain. And I go crazy every time my 4-year-old sneezes, worrying about the possibility he might get real sick.” When the news of Concepción’s positive AIDS test spread to her extended family, she became a pariah. “Everybody has done a disappearing act except my mother,” she says. “I can deal with the fact that I’m dying. But the rejection is very hard. Sometimes I need a hug or a kiss, or just to talk to somebody.”
A devout Christian, Concepción has found support from members of her congregation, several of whom have offered to take responsibility for her children when she is gone. Resigned to the fact that an infection may hospitalize her any day, she has taken a part-time job as a cleaning lady to cover the costs of her own funeral expenses.
Late at night, when she can’t sleep, Concepción composes letters to her children, to be opened after her death. The hardest to write, she says, was the letter to her 4-year-old son. “I asked him to remember the good times. I told him not to worry, because I am just sleeping. We will be together in heaven.”
—Additional reporting by Rhea Becker in Boston