Unfortunately, the sounds of silence often permeate the lives of HIV-negative women who are lovers or life partners of HIV-positive men. These women experience the pain and confusion of isolation unless they have some support in place to examine their lives in the situation in which they, sometimes surprisingly, find themselves.
"One of the most important aspects of the Mayer-Avedon group is that it helps women find an identity. These women, the HIV-negative partners and wives of positive male partners, don't know where they fit into the epidemic. They know that their lives are completely colored by AIDS, and yet, they aren't able talk about it so they don't have a context in which to see themselves."
Elizabeth Avedon knows exactly how that feels. Ten years ago she lost her husband to AIDS. Eight years ago she and Ruth Mayer started the Mayer-Avedon group to reach other women like them. Shortly after her husband died, Elizabeth Avedon felt isolated and alone. Attempting to raise her two-year-old son and returning to school for a degree in social work left her feeling overwhelmed. One of her professors suggested that she call Ruth Mayer, a woman who had recently lost her husband to AIDS as well. "At the time, I didn't know anybody in my situation and I was a little frightened to call her, but I did, and she came over to dinner." While their young sons played in the next room they talked about drugs and their children's grief. "At the end of the evening, we just looked at each other and said, 'If this is happening to us there have to be other women in this situation.' "
Other women were in similar situations, and by word of mouth, playground contacts, and private doctor's referrals three other women came to share their stories and their grief. In the eight years the group has existed that is the only thing that hasn't changed -- women coming together to share their stories and grief. Mayer-Avedon quickly became the only place where women could work out their grief, struggle with their anger, and work to overcome the stigma of AIDS.
Many Stories to Tell
When Sonia's husband died of AIDS, she was devastated and terrified. She had lost her husband and her house in a matter of days, and she had two children to care for and support. "I just wasn't prepared for how much hurt and anger I would feel once he was gone."
The strength of her reaction surprised her because "the entire time my husband was ill I was focused on him. As the negative partner to someone who is HIV-positive you feel this intense loyalty to your partner. You also have incredible pain, but you are not able to deal with it because you are not the one who is sick. I focused on my husband and put myself on the back burner. I couldn't acknowledge my own pain."
Many women who come to the group have similar reactions. They are unable to make the transition from lover to nurse and eventually widow. What often seemed to be a solid relationship is rocked by their partner's diagnosis. As Elizabeth Avedon points out, "the stigma of AIDS creates secrets, and secrets create silence. Silence creates guilt. And guilt inhibits their ability to own their confusion, anger and grief."
"We have a woman in the group now . . ." Elizabeth continues "It's been two years since her husband died, and she hasn't told anybody. She says it's because of the stigma. But it is not the stigma of her husband having AIDS that concerns her but what people may think of her -- what kind of wife has a husband who has AIDS? I feel this woman will not be able to leave the group and live her life freely until she is able to share her situation with the outside world."
Even Elizabeth found herself silenced for a time by the disease that killed her husband. Her husband had asked her to keep his illness a secret, but after his death she became adamant about telling the truth. And, in turn, she felt she had to help other women gain control of their lives by sharing a truth with which they have all had to deal.
Women in the Mayer-Avedon groups come from all different socio-economic and cultural backgrounds -- from upwardly mobile professionals to single mothers on assistance. They are women whose experience and exposure to HIV is varied. Some knew that their husband was HIV-positive when they married him. Some found out after many years of marriage. Some were aware of their lover's status as a former intravenous (IV) drug user. Others were unaware of their partner's bisexual lifestyle. Some have never known anyone in their community with AIDS. Others live in communities destroyed by AIDS. But Elizabeth feels the one thing they all have in common is "that they all need the group -- and the groups are so well run they can talk about their differences and try to restore a sense of control to the chaos that AIDS has brought into their lives."
The groups are often the first places that women can share the feelings that can't be expressed without criticism -- feelings of anger and rage. Laura, whose husband was diagnosed with AIDS immediately after the birth of their second child, learned at that point that he used to frequent gay bathhouses. Laura did not allow her husband to return to their home again and arranged for her husband to be cared for by his brother. Because she had told friends and family that her husband had cancer they felt that she was "cold-hearted". As she said, "They don't understand that I couldn't take care of him. They don't understand that he can't be my husband anymore." She could not vent her rage at her husband for putting her and their children at risk.
Often, women must reevaluate their belief that they have a perfect marriage when they learn about their significant other's HIV-positive status. Women who have been married for many years feel that they don't even know the man to whom they are married. Some women don't even want to know how their partner contracted AIDS and often internalize the fear that they are at the root of the 'problems' in their marriage.
As Elizabeth Avedon points out, the healing process "is very different for a women whose husband got AIDS through behavior they didn't know about and a woman who has chosen to have a relationship with someone is HIV-positive. There is a lot of rage and guilt among women who feel betrayed. When my husband became ill I was so angry that it happened, but I felt that I really couldn't get angry because I was healthy and he was suffering."
Even women who choose to become involved with men they know are HIV-positive experience feelings regarding stigma and guilt. Margot, a new member of the Mayer-Avedon group, has known her lover for over ten years. She knew he was HIV-positive when she became involved with him three years ago. As their relationship became more serious, she began to think about seeking out a support group. "Most of my friends were supportive, but some thought I was crazy to be involved in this relationship. Finally, I met with the two social workers who run the support groups and they really knew what I was talking about."
It's All in the Family
The support groups are often the only place that women can talk about the difficulties they face as a nurse or a single parent. This may also be the only place where they can discuss what to tell their families and children or the intricacies of negotiating safer-sex. Though safer-sex has become standard among certain groups at high-risk, most heterosexual, monogamous women have not had to traverse the intimate terrain of safer-sex practices. Though Mayer-Avedon does not actually hold seminars to teach women safer sex practices, it is a place to share methods, ideas and feelings that may be painfully embarrassing in other situations.
Single motherhood and the risk of having a child with an HIV-positive partner is another issue that comes up often in the groups. As one woman in the group said, "All my friends are having babies. They ask me why I'm not. I can't tell them the truth, so I tell them that my career is too demanding." Sonia remembers how she felt when her second child was born, "I felt so different than I did when my first son was born. I felt so sad when I gave birth to my second baby knowing that I didn't know how long his father was going to be with us."
As the face of AIDS has changed so has the shape (and size) of the Mayer-Avedon groups. There are now different groups for partners and widows, and now that people are living longer with HIV the challenge will be to continue to provide a safe place for women to come and share their stories and learn how to live with the disease. It is the goal of Mayer-Avedon to provide hope to families living with AIDS, to help women from yielding to the disease by becoming positive themselves or losing their identities in the role of full-time caregiving.
They have been enormously successful in the eight years they have been operating. The women who join the partner's groups stay for an average of three years, and women who have been involved in the partner's groups stay in the widow's groups (after the death of their partner) for a shorter period of time.
Some women have used the groups to learn to speak out for themselves and their families. Sonia, whose strong voice seems to have fully developed in the nurturing atmosphere, often finds herself in the role of educator and advocate. She views speaking out and writing about herself "not as courageous; it's about doing something positive. It makes me remember that I am not alone."
For more information please contact Mayer-Avedon Women's Support Group, Inc. 18 West 18th Street, 11th Floor, 212-989-6649. Mayer-Avedon will be forming a mixed status couples support group. Please contact them at the number given above to receive information.