Eight years ago, I began leading support groups for HIV-negative wives of men with AIDS. I formed the groups after meeting another woman who had recently lost her husband to AIDS. She too had nursed her husband, carefully keeping the name of his disease a secret from all but close friends and family. I had invited her to dinner.
While our young sons played in the next room, we talked of PCP, CMV, IVs, and our children's grief. At the end of the evening we asked each other, "Where are the other women like us?"
The first group for HIV-negative women partners met in the storage room of a chiropractic office. The first meeting, with three women, had a manic energy as each woman struggled to find the vocabulary to connect their feelings to the reality of their lives: "I've never told anyone this before," "Nobody knows," "He doesn't want me to tell anyone."
Struggling to make sense of their husbands' illnesses, they searched each others' faces for an identity, something to help carry them through the transition from wife to caregiver and from lover to nurse. They seemed dazed by the trauma of their husbands' diagnoses. Their energy spent caregiving and keeping the secret within the walls of their homes, they had little to spare when processing what was happening to their own lives.
At the time of his diagnosis, my husband had asked that his illness be kept a secret. IV poles and medicines were carefully hidden when our son's friends came over to play. After my husband's death, horrified that such a good man had died unable to speak the name of the illness that had taken his life, I became adamant about telling the truth. "My husband died of AIDS," I said to anyone who remarked on my status as a single parent. They responded with questions. "Are you all right?" I was asked. I said that my son and I were fine. "You're lucky," I was told.
With that response, the pain of grief and the struggles of single parenthood seemed lost. I did not feel lucky. I felt the sympathy my son and I were due was obliterated by people's fears, ignorance, and curiosity. I knew that, for as yet unknown reasons, I had come through five years of exposure to a deadly virus uninfected.
Given the statistics, I knew I should give thanks. After my husband's death, however, I quickly learned that my son and I would have to work hard to overcome the stigma of our exposure to AIDS. I was a survivor with no place to talk about what I had survived.
The groups grew and grew, but some things still haven't changed, as we've seen in statements like these: "My husband died two years ago and only this group knows that it wasn't cancer." "I can't tell anyone at work. They make jokes about people with AIDS." "My son sees his father taking pills every day, but we don't tell him why." "I wonder whether anyone will want me, should I lose my husband." The stigma persists.
Scared of questions like "How did he get it?", "What kind of man are you involved with, anyway?", and "What kind of woman are you to marry such a man?", most women continue to guard the secret of their husband's diagnosis.
They need to make peace with whatever behavior caused their partner's infection. They need to be educated about, and become more comfortable with, safer sex. They need to understand the risks involved with having their husband's baby and the possibility of single parenthood should they choose adoption or artificial insemination. They need to come to terms with the fact that, although their lives are intimately tied to the AIDS epidemic, they are survivors.
For more information, write the Mayer-Avedon Women's Support Group, 18 West 18th Street, 11th floor, New York, NY 10011, or call them at (212) 989-6649.