Facing the Emotional, Medical Issues of Women With HIV : AIDS epidemic: Isolation, denial and societal attitudes are some of the problems. A conference in Irvine Saturday will be devoted to the subject.

Tamara Lindley Brown was still breast-feeding her 13-month-old son when she learned that she had tested positive for the AIDS virus.

At first, she said, she was calm.

“An hour later, when it sunk in, I was just prostrate, crying on the ground.”

Then, Brown said, she did the only thing she could think to do. She called her gay friends.

“They were the only ones I trusted,” she said.

Many HIV-infected women trust no one.

Throughout the county, AIDS activists say, these women exist in isolation, forgoing emotional support and sometimes medical treatment.

“There is not the community (for women) that gay men have that has really helped them survive this holocaust,” said psychologist Valerie Gold-Neil, who runs the county’s only support group specifically for HIV-infected women. “The first thing I hear is, ‘I’ve never met another woman with HIV.’ That isolation is a killer.”

On Saturday, medical professionals and AIDS activists will train floodlights on this subject at UC Irvine with the county’s first full-day conference devoted to women and HIV.

Observers say there are a plethora of problems to deal with as women are swept up in what one called “the second wave” of the AIDS epidemic.

Activists say, for example, that women should know that abnormal Pap smears and repeated incidences of common gynecological infections can be AIDS-related. In addition, they say, women must push past any guilt, fear or denial that keeps them from entering doctor’s offices or support groups.

“By the time women are identified as being HIV positive or having AIDS, they’re very, very sick,” conference organizer Ellen Turnbull said. “The things that are keeping men alive longer are not happening with women.”

Through August, more than 2,100 cases of acquired immune deficiency syndrome had been documented by the Orange County Health Care Agency. One hundred eight of those were women, and local statistics show a steady rise in the incidence of AIDS among women. Worldwide, AIDS experts say, by the year 2000 more than half of all newly infected adults will be women.

Local officials say as many as 15,000 Orange County men and women may now be HIV-positive, most without realizing it.

Medical workers are alert to the risks of AIDS among gay and bisexual men and among intravenous drug users, but women are more likely to be overlooked as candidates for HIV testing, especially if they are married and have never used drugs intravenously, AIDS activists say.

“I’m seeing more women who have contracted the disease through heterosexual contact,” said Dr. Jody Meador, HIV medical director for the Orange County Health Care Agency. “It is frightening to see women come in after being diagnosed who had absolutely no idea they were at risk. And, more often than not, that seems to be the case.”

Once the women learn they are HIV positive, AIDS activists say, the women tend to turn inward.

“I know of instances when women have literally gone into seclusion for over a year,” said Brown, who is now reaching out to other women with the AIDS virus. “I’ve received a phone call from a woman that has lived with it 10 years and told no one.”

Women often feel tremendous guilt when they learn they have contracted the AIDS virus, said Pearl Jemison-Smith, the county’s HIV Planning Advisory Council chairwoman.

“Are you going to be able to tell your next-door-neighbor?” she asked. “How about your mother even? Somehow, we have to break through the denial and guilt and help (women) become empowered.”

Maria was four months pregnant when she decided to have an HIV test just to ease her mind. The 37-year-old woman, who did not want to give her full, real name--was not in a high-risk group. She had never used drugs intravenously and had been intimate with only two men in six years, neither of whom were drug users or bisexual as far as she knew.

Still, she felt anxious.

“You know how something starts eating away at you?” she said. “I had come to the conclusion: ‘I’m not with them 24 hours a day. How much do you know a person?’ ”

After Maria learned that she had tested positive, she told both men. The former boyfriend tested negative; her current companion refuses to be tested, she said.

Although she has family members nearby and close friends, Maria has otherwise kept the test results a secret. Now eight months pregnant, she said, she simply cannot deal with any more stress.

“I just couldn’t do it right now,” said Maria, who must still find the words to tell her 11-year-old daughter. “I feel my biggest concern at this point is the waiting period to find out if the baby’s positive or not.”

It is common, AIDS activists say, for a woman to discover that she is HIV-positive only after she gives birth to a child who is then tested.

“Something needs to be done for these women who are falling through the cracks,” Gold-Neil said.

However, if a woman tells her gynecologist she has not been intimate with anyone but her husband, the doctor is not likely to order an HIV test, Gold-Neil said.

“What physicians typically do is think: ‘Oh, not this woman. She’s been married 20 years. How could she be infected with HIV?’ The doctor kind of buys into that denial. Physicians don’t want to see it any more than we do.”

Although dozens of HIV-infected women have called her in the last year, Gold-Neil said only five attend her weekly support sessions in Laguna Beach.

Some say the group is too far away or that they don’t have transportation or child care. Others say their husbands don’t want them to attend. And some are simply more afraid of the stigma attached to carrying the AIDS virus than they are of being alone.

In a sense, she said, sexism has taken over where homophobia leaves off.

“They’re thought of as being whores,” Gold-Neil said. “You get that stigma, ‘Well, they brought it on themselves.’ ”

Brown, however, is determined to help other HIV-infected women find their way out of isolation. She recently helped form Positively Straight, an Irvine support group for heterosexuals with the AIDS virus.

“If I can make another woman OK to step out, that’s what I’m here for,” she said.

Brown’s baby and husband have both tested negative for the virus.

After her baby is born, Maria said, she may also join a group and begin talking to other women. Some of her friends are still “sleeping around,” she said, and she feels it’s important to get the word out.

“This could happen to you, what happened to me,” she said.

The Women and HIV Conference is sponsored by South Coast Medical Center and UC Irvine, and is open to the public. For more information, call (714) 499-7205.