Mature Woman with HIV Feels Shunned by Her Own Community

Permit this old lady an opportunity to step up on her journalist soapbox and speak out in recognition of the overlooked women in the HIV/AIDS epidemic: the silent older women, who, as a group, were given conspicuous short shrift at October's National Conference on Women and HIV/AIDS. As they customarily are, the senior women were, for the most part, invisible and isolated; they were essentially ignored.

Yes, planners of the 1999 national women's meeting followed the lead of many "professionals" in the HIV/AIDS community -- scientists and researchers, educators, medical and social service providers, other conference organizers -- who tend to neglect this aging population when reaching out to females in general. This is an oversight that must be corrected.

Of the approximately 65 sessions offered at the Los Angeles conference, only one examined issues of older women in its entirety. Should I have been surprised by this unfair representation? No. The myth is that women, as their years advance, are no longer sexual beings, and therefore, can't be infected with the virus. So there's no urgency to consider them or their place in the HIV/AIDS picture.

All this, despite the fact that AIDS cases among females over 50 have nearly tripled in this decade, while heterosexual transmission rates in this age group have increased 106 percent. At the conference, there was a paucity of detailed presentations on HIV prevention programs targeted at aging women, who may be more vulnerable to infection because they remain uniformed about the disease. This was especially discouraging to me because that is primarily what I preach: prevention. I am passionate about prevention because of a letter I opened on a Sunday in January 1991, upon my return to my Kansas City apartment from a fortnight spent in San Francisco. There I celebrated the holidays with longtime friends and with my only child, my adult son Stephen.

The letter, from a health insurance company to which I had recently applied for new medical coverage, announced that I had been rejected because of a "significant blood abnormality," revealed in a routine test. Shaken by the startling news, I slept little that night, and next morning, telephoned the insurance underwriter who had signed the letter.

"What is this 'significant blood abnormality?'" I inquired. "Why did I flunk your test?" Her reply: "Oh, I'm sorry but that's confidential. Your doctor will have to tell you." A few hours later, I was in the office of my family practitioner, who looked troubled as she referred to a fax from the insurance company and said: "Jane, this report claims your blood tested positive for HIV." Stunned, I had a second test two days later, anonymously this time. And, then I waited for the results. I waited two weeks -- the longest two weeks of my life -- before I learned that the second test only confirmed that I am HIV-infected.

My family and the few friends I told were as shocked as my doctor because I didn't fit an HIV/AIDS stereotype: I obviously was not a gay man; I had never been an injecting drug user, nor had I ever had a blood transfusion. At the time of my diagnosis nearly nine years ago, I was a 55-year-old career woman, who after graduating from the University of Kansas journalism school, spent 15 years as a reporter/feature writer for the Kansas City Star and continued as a writer for another two decades.

I had lived a traditional lifestyle: I'd been a virgin on my wedding night in 1959 and I remained monogamous during 23 years of marriage. But in the early 1980s, I was divorced and, for the first time in a quarter century, I was dating again. I didn't consider myself promiscuous. I didn't frequent the singles bars. I went out with men my age who, like me, had been married and were divorced. In those days, I knew little about HIV/AIDS, only that a mysterious, fatal ailment was affecting the gay community. It didn't occur to me that I would put myself at risk by engaging in unprotected sex with an attractive, intelligent, amusing man of many interests, a man who had been a close friend my entire adult life. But that's what happened to me at the end of 1985 at the age of 50. Infection with HIV.

Following my diagnosis in 1991, I withdrew. I did not have the courage to put myself in situations that might be painful -- where I might experience discrimination, rejection or prejudice. I lived in partial isolation, spending time mostly with family and friends who were supportive, compassionate and non-judgmental. Four years passed. I took my prescribed antiviral drugs and I was blessed; I stayed well. But I remained shamed and humiliated, still hiding the fact of my HIV.

Then, I had a change of heart. Why not liberate myself by publicly admitting my predicament and, perhaps, help some others at the same time? Encouraged by my son and my friends, I decided to stand up and say, "Look at this face, this old wrinkled face. This is another face of HIV. It's not who you are. It's what you do and don't do, regarding transmission of the virus." At first it was not easy. I had to conquer a fearful stage fright, and I had to become semi-comfortable with admitting: "I live with a stigmatizing sexually transmitted disease." Now, nearly five years later, I have given more than 250 educational programs around my home base in Missouri and in 26 cities in 18 states.

Troubling, however, is the fact that too few of these HIV prevention presentations are in settings where I talk directly to older women or to those who provide medical or social services to them. The prevailing, naïve attitude that senior women are not at risk for the viral infection, and don't need prevention information, must be reversed -- in everyone's mind.

This includes the women themselves, who need to be aware that their behaviors can put them at the same risk for infection as their younger counterparts. Coming of age in a generation that considered condom use necessary only for birth control, post-menopausal females have to be taught "safe sex" practices. I don't want them to make the mistake I did; and, then join the increasing numbers of HIV-infected.

It's no fun, being "senior" and living with the virus. Think first about how little information there is about possible interactions between antiviral drugs and those routinely prescribed for a variety of older ailments, such as osteoporosis. Personally, I wonder about my combination of two disparate therapies: triple antiviral and hormone replacement.

And, try as one might to age with humor and grace, it is not always easy to accept the limitations of decreased physical and mental capabilities. Couple these frustrations with the variety of feelings experienced by any HIV-infected woman, and the conclusion is that older females who are often hesitant to reveal their HIV status, even to families, may have to endure more emotional and physical stresses.

These sensibilities are intensified by the dual stigma of (1) infection with an STD and (2) ageism -- we know that in the United States, our society does not respect or value geriatric generations. I am reminded of the smug teenage girl who commented, after I spoke at her high school: "Look, we all know that we're going to die someday. You're old. So, what's the big deal?"

The "big deal" is that I'm not giving up, not at age 64. As a founder and co-chairperson of the National Association on HIV Over Fifty (NAHOF), I intend to live on and remain an activist. I will continue to advocate for greater acknowledgement and acceptance for older HIV-infected women and to champion prevention programs to keep negative women free of the virus.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).