And second, she needs to stay alive.
Misdiagnosed
A bluish glow bathes Sopher's face. It is nighttime, a bad time, when she is struggling to understand what is wrong with her. It is the year 2000, as depicted in a reenactment in Sopher's documentary, after dozens of doctors have misdiagnosed her.
"I want to know if I have symptoms" of AIDS, she says as she searches the Internet, using her symptoms as key words.
Sharon Sopher, right, and Elizabeth Ventura take in Sopher's photo exhibit of women living with HIV and AIDS. The exhibit, along with a screening of Sopher's documentary, were held at the Department of Health and Human Services.
(Michael Williamson -- The Washington Post)
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On and off for the previous five years, she had suffered pulmonary problems, inflamed lymph glands, dry cough, fatigue, hair loss, bouts of diarrhea. On a trip to the District, she nearly fainted on the Dupont Circle Metro escalator. A stranger braced her before she could fall. Another time she did collapse, on 42nd Street in Manhattan, where she lived, and ended up in the hospital.
Always, batteries of tests followed. Yet no doctor tested for HIV.
It is, she suspects, because she is an older white woman who doesn't fit the stereotypical profile: IV drug user, prostitute, or woman of color. But HIV never occurred to Sopher either. She never had pneumonia or skin lesions or hepatitis, all of which are commonly associated with AIDS.
Eventually she became so ill that she left her beloved New York, where she'd worked for NBC News for 10 years, and returned to Madison to be near family.
On the Internet that night in her Madison apartment, it slowly dawns on her. Her symptoms point to one thing. (A doctor would later confirm it.) A crushing reality bears down on her. It is followed by a burning anger that she'd been misdiagnosed for so long. And the realization hits her that she couldn't possibly be the only one.
"I knew I had just stumbled upon an amazing story -- the story of women with HIV," she narrates in her film.
Nearly a third of new HIV infections in the United States occur in women, according to the Centers for Disease Control and Prevention. And women now account for 21 percent of all people living with AIDS.
And yet Sopher says she faced a wall of stigma and denial in Madison after her diagnosis.
In her 75-minute documentary, she tells of AIDS counselors who urge her not to reveal her status to friends and family for fear she will be ostracized. Of a Catholic priest to whom she turned for counsel who told her not to visit him again. How she discovered that groups that cater to men with AIDS did not seem particularly welcoming of women with the illness, or at least she didn't feel welcome. There weren't even books in the library about women and AIDS.
"I have never felt so strangulated as a woman in America," she says now in her hotel room.
She had entered a new world, a world where a woman with AIDS would be isolated and alone, disqualified from being respected or considered anything but a diseased person: "Sharon Sopher, woman with AIDS."
For three weeks after her diagnosis was confirmed, she stayed in her apartment. She didn't answer the phone. She kept her curtains drawn. Her family knew she'd been sick and had undergone tests. They feared it was cancer. Her sisters confronted her, demanding answers.
