Polk women with AIDS are lonely

By Robin Williams Adams

The Ledger

LAKELAND — Polk County women infected with the AIDS virus share more than just a life-threatening disease. They have secrecy and fear in common.

One Polk County woman agreed to be interviewed only after being assured that her name, age, job and city, as well as the sex of her child, would remain confidential.

“It’s a very isolated life, very lonely,” she said. ‘You just can’t tell everybody what you have. A lot of people are uneducated and don’t understand.”

Only a few family members and close friends know. Some have rejected her.

“I had a very good friend,” she said, crying. “I told her and she wrote me this goodbye letter.”

Another local woman wouldn’t risk using even her first name in a newspaper article, although it’s not an unusual one. She’s afraid of being run out of her neighborhood.

In Polk County, most AIDS-infected women don’t know how to find each other.

“Practically everybody I know who’s infected in this county are gay guys,” a Lakeland woman said in frustration.

She longs for a women’s group, where she can talk about problems faced by women raising children while coping with AIDS.

“If there was a group together, more could be let out about our feelings, what’s really bothering us,” she said.

“Gays and other people who don’t have kids don’t know what we go through; knowing I’m going to leave my child someday and she won’t have a mother.”

The number of women with AIDS nationwide grows relentlessly, from about 200 10 years ago to 44,403 through 1993. Women comprise 12 percent of the total AIDS cases in the U.S.

There were 6,376 Florida women diagnosed with AIDS through March 1994 - 95 in Polk County through April - making them 17 to 18 percent of total AIDS cases in the county and state.

Each year in Polk County, more women are reported with AIDS: nine in 1991, 16 in 1992, 37 in 1993. Still more are infected, but not yet at full-blown AIDS.

Their ages range from teen-agers to women older than 50.

Previous attempts to form a local women-only group have failed.

Although women are welcome at two existing AIDS groups in Polk County, few attend. Tampa does have some separate groups for AIDS-infected women.

“Women who traditionally are the main members of support groups aren’t interested in ones for HIV (human immunodeficiency virus) here,” said Virginia Culbert, director of Polk, Hardee, Highlands AIDS Services and Education.

Along with health and child rearing issues, women who have AIDS often are coping with feelings of anger, betrayal and loss.

“We used all the precautions, but I got infected,” one says angrily. “He left with someone else. Now she’s going to have a baby.”

Another Polk County woman didn’t know she or her boyfriend were infected until he died of an AIDS-related illness.

Sex with an infected partner and intravenous drug use run neck and neck as the leading causes of AIDS among Florida women.

Lack of access to medical care is one of their biggest problems.

Even in Hillsborough County, where the number of AIDS cases is four times that of Polk, women with AIDS have had trouble finding gynecologists.

At a women’s support group in Tampa, sponsored by the Tampa AIDS Network, a small group of women talked freely about their AIDS infection and how it disrupts their lives.

“We come here and tell how we feel and say what we think,” said Terry, a recovering drug addict and mother of four. “If you’re hurting, you let somebody stand by you.”

Many in the group are battling to regain custody of their children. Several have had drug problems. Two lived briefly in Polk County.

Terry, diagnosed in 1988, said she took the AIDS test as a joke.

“Even after I Was tested, it was still a game,” she said. “I didn’t take it seriously because I didn’t have symptoms.”

It took years before she accepted her condition and sought help.

Another member spoke about taking part in an AIDS conference, urging others in the Tampa AIDS Network group to speak out about women’s needs.

“I told them, you want to see what it’s like living with (AIDS infection), come home with me,” 26-year-old Angelique Martin said.

“Sometimes I don’t feel like getting up,” she said. “My child is crying and he needs things I don’t have money to get.”

Her infant son sees 12 different doctors.

Women have a different perspective on what’s needed in the fight against AIDS, Martin said. For their own protection, she said, they need to make sure programs are available to give them and their children the help they need now.

“If you look at the people who’ve been active, it’s basically been the males,” she said. “You hardly ever see a woman with HIV.”