Woman shares compelling story of HIV

Susan, a Montana woman with AIDS, shared her compelling story recently with Glacier High School students and other young people in the valley.

Because a woman tests positive every 35 minutes in the United States, Flathead Family Planning sponsored Susan’s visit to raise awareness of AIDS, particularly among women and girls.

While more men than women have the disease, female numbers continue to grow.

“One in four people living with HIV are women,” said Holly Jordt, a nurse at Family Planning. “It’s time for women to get tested.”

Susan said she never expected to find herself as one of these statistics.

Her story begins in Montana where she grew up. Susan, now 42, said she left home at 18, fell in love, got married and had a baby. It had the makings of a feel-good Hallmark movie until the plot took a terrible turn.

Susan was alone at home with her 5-month-old baby when a knock at the door changed her life forever.

A representative from the health department told her that she had been exposed to HIV.

“I said, ‘What’s that?’” she recalls. “They said ‘That’s the virus that causes AIDS.’ I said, ‘You’ve got the wrong door.’ It took a lot of convincing for me to get tested.”

She argued that she wasn’t gay and didn’t do drugs. Women, especially those in a committed relationship, weren’t considered at risk in 1991 when she was 23.

Health department officials didn’t disclose who provided her name but her husband, who died in 1994, later told her that he was the person who sent the health officials to her door.

When she tested positive, Susan was terrified for her tiny daughter who had been born prematurely weighing just three pounds, 12 ounces. She had to wait two weeks for her daughter’s results.

“I thought I had killed her,” she said. “That was the longest two weeks of my life. I couldn’t even set her down.’”

Two weeks later, Susan got the results showing that her baby had a 90 percent chance of not being infected. She had to wait three more years to receive a clean bill of health for her child.

At the time, she was consumed with anger toward her husband. Susan had trusted him completely and now she faced a potential death sentence.

“I needed to blame someone,” she said.

Since then, Susan has come to realize that he did not knowingly infect her with the virus. Ignorance of the threat of the virus killed him and condemned Susan to a lifetime of battling to stay alive via an ever-changing cocktail of drugs.

“You’re responsible for your own health,” she said. “With education, I would have realized how susceptible I was as a woman.”

Just six months into her fight, she decided to risk her privacy in the interest of making a difference.

She talks to young people in many settings.

“If I can save one life, it’s worth it,” she said. “It’s easy to avoid.”

For her courage, Susan was honored with the Governor’s Award for HIV Awareness in 2008. She speaks simply but directly about how a person does and does not acquire the disease.

She delineates the four bodily fluids of HIV virus transmission — blood, semen, vaginal secretions and breast milk — and the routes into the body. Her audience learns that any activity that exposes a person to these fluids put them at risk for an HIV infection.

She underscores that saliva and urine do not transmit the disease.

Susan finds some people refuse to believe that they won’t become HIV-positive from casual contact. They also blame the victims for becoming infected.

“There’s a certain part of society that can’t be taught — they think you must have done something to have this,” Susan said. “My family is like that.”

 Her partner of 13 years, who was a friend first, provides proof that protected sex works. She points out that he has not become positive from casual contact living in close quarters with her.

“He feels the stigma as much as I do,” she said. “It’s scary — they’re afraid of the unknown. I never knew what prejudice was until I got this disease.”

In spite of all the publicity about HIV in the last 18 years, Susan said she hasn’t seen the stigma decrease. She hopes at least that more people use condoms and both get tested, ideally before embarking on an intimate relationship.

After her talks, Susan said some confide in her that they had unprotected sex, often under the influence of alcohol, and ask her advice. She encourages them to get an HIV test and take command of their health and safety.

“For women and girls, it’s easy to avoid if you’re empowered,” she said. “If you can’t say no, make sure you use a condom.”

Judging from her own daughter and her friends, Susan said the young still feel invincible even from AIDS. She added that young and old alike disconnect from sexually transmitted diseases with permanent birth control in place.

“You can get pregnant a few days a month,” she said. “You can get a STD any day of the month.”

Statistics of risky behavior show many young people don’t practice abstinence or safe sex. A 2009 survey of Montana youths in grades 9 through 12 revealed an average of 48 percent had sex; 68 percent used a condom during their last encounter.

Since 1985, almost 600 people have been diagnosed with HIV in Montana. In 2009, another 31 Montanans got the devastating news that they were HIV-positive.

This number was almost 30 percent higher than 2008. Deaths since 1985 have numbered 382.

Susan has been fortunate in recent years to find a combination of five drugs that have kept her healthy enough to finish schooling and work at a job. It was much tougher in the earlier days when she took up to 25 pills a day with terrible side effects.

“Most of the ’90s, I wasn’t able to work,” she said.

She has fought off bouts of pneumonia, shingles, thrush and yeast infections. Her blood is tested every three months to monitor when the virus becomes resistant to her drugs.

When that happens, she starts a new combination that makes her violently ill during the first weeks. Susan always faces the temptation to stop the drugs since she feels better off them.

Still, she feels gratitude that she lived to raise her daughter and remains in relatively good health with improvements in therapy over the years.

“The meds have made leaps and bounds,” she said. “It’s amazing what they’ve done. I never thought I would live this long.”

Susan worries that her appearance of good health might diminish her impact with the students. She makes the point that AIDS remains a fatal disease.

“I don’t want them to think you just take a pill. Side effects can be very debilitating,” she said. “It’s a strict regime. If you miss a dose you risk mutation of the drug.”

The financial burden can be substantial. Susan’s drugs cost $2,500 a month and cause numerous side effects over time.

Some people get diabetes and clogged arteries or suffer body changes such as fat accumulating as a buffalo hump on men or around the middle on women.

“It’s a less-than-ideal way to live,” she said. “I hope they [students] go home and share this with their parents and it starts a conversation. Maybe they’ll think ‘I should get tested.’”

 The Flathead City-County Health Department offers painless, free anonymous testing five days a week with results available in 20 minutes. Jordt said a person may avoid a wait by calling 751-8150 for an appointment.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.