An Open Letter from A Prison Doctor to Those Who Care for Women Living with HIV
By Anne S. De Groot, M.D.
I have been providing medical care to HIV infected women who are incarcerated at a prison in Massachusetts since 1992. Working with the HIV-positive women at that clinic opened my eyes to their struggles. I am amazed that they have been able to survive such difficult lives, and I have been deeply affected by their strength, their joys and their sorrows. I wrote this short piece on Friday night, July 28, 1995, after attending HIV clinic at the prison. Some of the details of this story have been changed, to protect my patients.
It is Friday night after HIV clinic. I am lying in bed holding my daughter in my arms. Her face is moon shaped and turned up to the light coming through the windows. She is beautiful, she is two, she is a small but precious vessel of joy. During the daytime her joy spills over and over as she laughs and plays.
I cannot sleep. It is not because the heat is oppressive, it is not because the sprinklers outside are turning incessantly, it is not because the trees make scary shadows on the wall. I cannot sleep because I cannot forget what X told me about her father today. "When I went home at Thanksgiving he grabbed my breasts, and my ass" and "it happened again at Easter." She told me it started when she was three "but it was only oral sex" and it continued until she was 13. She said "he never penetrated me" . . . except one time, he almost did, in the toolshed, and she doesn't remember exactly what happened, but it stopped after that. There was a divorce and a custody battle and she ran away to Florida to live a different kind of life when she was in her early teens. She returned to her father's house when she was seventeen, and one day, when her stepmother and stepsister had left the house, he tried to get her to do it again. He walked into the kitchen "you know, like that" (making a gesture to show a man who had nothing on below his waist). She said that she laughed nervously and said, "No, Dad, I really don't want to do that now" (I wish I could make you hear the voice that she used to say this last sentence, because it sounded so childlike and pleading and I felt that I was standing in the kitchen watching this happen) and he said, "Why not? You would do it if I paid you."
I can't get this out of my head tonight. X had just finished a post-incarceration drug abuse recovery program, and had returned home for Thanksgiving, when her father touched her again. She had just finished the program, she felt safer and stronger, she thought she was protected by her HIV, and he invaded her space anyway. After Thanksgiving she started eating to keep from using drugs again, and purging to get clean, and eating and purging. She didn't pick up drugging again, even though her self esteem had hit rock bottom. Her father tried to touch her again at the next family reunion.
Just a few weeks later she went along with some friends who had decided to start using drugs again, and she ended up back in prison, where I saw her looking huge and not at all HIV-positive but bruised and ashamed to be back inside. She couldn't say, at that time, why she came back (now she says that she was still "too much inside of it"), even though I tried very hard to learn from her where the weakness lay in someone I knew to be resolved to recover and dedicated to avoiding reincarceration. Today, after she finally told me about her reasons for returning, she said that she felt a huge weight leave her. I asked her if I could write it all down, especially this part that just happened, so that we could use her story as a tool to change this terrible world.
How do I keep X safe from her father? How do I repair the damages that have been done to the women who share their stories with me? Questions fill my head. How do I keep my children safe from this? How can I keep it from happening to the child next door, to the child across the street, to the children in my city? I lie awake listening for cries and tears around me, feeling powerless to keep this harm from happening. Tonight, in the heat and in the dark, the danger to women and children overwhelms me. I sit down at my computer to write it out, to bring it into the light, to purge it from me. I don't know where this writing will go. This is X's story, and my own. If we bring our fears and our wounds out into the light, will writing these stories make a difference in women's lives?
And how did this conversation with X came about today? Some people think I go dredging for these stories. In this case, I had asked her to see the dietitian to talk about her eating disorder. I sent her to the dietitian for two reasons -- to find some way to draw attention to her bulimia and to get some assistance with it, and also to illustrate to the prison dietitian the complexity of the dietary issues involved in caring for HIV seropositive women. Many, too many, of the women I see in my clinic have eating disorders: how am I to be sure that they get their HIV medicine if it is purged with their food? My experience at work confirms what is known about eating disorders: bulimia has been linked to childhood sexual abuse.
Today X told me that the session with the dietitian was helpful, because she actually confessed that her bulimia was worse during the past winter, and because she finally realized the connection between her father's actions and her reincarceration. To tell me this, she had to tell me that her father had abused her again, and that is how the whole story came out. We talked at length, and she smiled through her tears as she left my clinic. Her terrible sadness, fear, and anger, remained with me.
So what does all of this have to do with running an HIV clinic for women? Nothing at all, if you ask prison officials and prison health care corporations. Nothing at all, if you ask my medical colleagues who wonder why I don't do "my work" and stop seeking answers to my questions. But I can't separate listening to these stories and seeking to understand my patients from my work. If my work is to "take care" of HIV infected women, then understanding why these women use drugs, do sex work, don't go to their HIV clinic appointments that I set up for them on the outside, and end up coming back to see me in the HIV clinic at the prison is part of the work that I have to do. Understanding why my patients have eating disorders will enable me to intervene effectively, so that the medications they are taking for their HIV disease are absorbed. Learning more about my patients helps me set priorities: is it more important to find safe housing, away from an abusive spouse, or start a new anti-viral drug? Is it more important to re-unite them with their families, than to urge them to move to a city where they might have access to HIV care? Which intervention will save the life of my patient?
A case in point: Y returned to prison at the same time as X. Y was also a recent graduate of the post-incarceration drug recovery program. The story that she lives with, the story that was untold until she came to my clinic the first time, is this one: her son is also her brother. Her relationship to her son/brother has never been discussed within her family. Is it a surprise that she left home at an early age and spent many years on the street drinking, drugging, and doing sex work to support her habit? Why did she tell me and no one else her story? Because I asked her why (not how or when) she started using drugs. I have learned from my experience at the prison that many of my patients left home as teenagers because of childhood sexual abuse, turning to drugs for comfort and sex work to support their drug habits. Unless the cycle of abuse is broken, these women will never be free to choose a healthier lifestyle -- whether they are already living with HIV or at risk of becoming infected.
Y spent many hours talking about her son/brother with me at the clinic, and in sessions with counselors in the drug recovery program. As part of her drug treatment program after she was released from prison, she wrote down all of the things her father did to her. She says now, after returning to prison for using drugs again, that telling her story at the drug treatment program made her feel strong enough to go home to see her son, at last. She thought she might tell him that she was HIV-positive, but wasn't sure that she could tell him the truth about their kinship. He still thought she was his sister, and she didn't think that he was ready to learn the truth she had been living with every day, all 17 years of his life.
When she returned home, she found that her son had a newborn son, and that she was now a grandmother and an aunt all at once. Her son had named this new child after his father, her abuser. She spent many hours that weekend holding the baby. Then she went off to find her friends, so that she could get high and forget about the whole thing.
Another case in point: Z is 25. Last year, Z moved back to her mother's house after her husband died of AIDS, and her mother moved her stepfather back into her room with her. That was the way they lived when she left home at 16. She says that she protested, that she ran out into the yard crying about incest, but they sat her down at the kitchen table and told her that it couldn't be incest because he was not her real father. I try to imagine this scene in my head -- I see the kitchen table, the stepfather, the mother. How can this be? I ask her why her mother does this to her. She says her stepfather doesn't care that she is HIV-positive, he doesn't wear a condom when he sleeps with her, and she thinks that her mother is "getting him back" this way. She wears her hair long, in two big ponytails set high on her head like a little girl. She talks in a little-girl voice and won't look me in the eye when she tells me that she has to go home when she gets out, to her mother and stepfather, because she has no other place to go.
For so many of the women I take care of, there is no safe place to go. X tells me about "running away" from her father; running from room to room, and running away from home. Running from the hero of her life. The stories the women tell are all different but all the same: The abuser is always the person they love the most. Recovery involves calling the abuse by its name and losing that love. For some, this loss is the largest one, bigger even than the initial loss of trust. And for women who are HIV seropositive, the urge to return home to find comfort can be heartbreaking. There is no other place to go, no safe place to find love.
I am told that incest has been a part of human behavior for a long, long time. Through my work at the prison, I am learning the terrible consequences of incest. Women who have been forced to have sex as children, who have never been able to speak about their experiences, bear the scars forever. For women who have no access to professional counseling and psychotherapy, drugs and alcohol numb the pain and diminish the terror of sexual intimacy. Blame is internalized, and self-esteem is destroyed. The links to drug use and sex work are clear; and now HIV has entered the equation. These links, between childhood losses, failure of support systems, lack of access to means of recovery from abuse, drug use, sex work, and HIV infection, are illustrated over and over again by the women who come sit with me in my HIV clinic at the prison and speak to me about their lives. Because I ask them about their lives and because I choose to spend the time listening, I have learned that every other woman who comes through my doors at that prison clinic is a survivor of childhood sexual abuse.
I ask: What comes before? How does it start? What unhinges that taboo, allows men to begin to damage their daughters, their granddaughters, their nieces, and their sisters? I don't know the answer. What can we change about our society to prevent this from happening to women? A student of mine wrote me the one answer that I think is valid: we must not tolerate sexual abuse of children. There must be no acceptance, no excuse, for valuing the lives of women and children less than sexual pleasure. I have come to know the newest consequence of childhood sexual abuse: to damaged self esteem and troubled hearts is now added the burden of HIV. For my child, I don't know which way the danger lies, and that is why I sit here writing, wondering if I will be heard, wondering how I can protect my moonlit daughter, wondering how I can change women's lives.
Previously published in Friends for Life. The stories of patients X, Y, Z have been changed, to protect their identities. Any resemblance to any one individual's life story is coincidental. This work would not be possible without the support and encouragement of S. Zierler, C.C.J. Carpenter, Ken H. Mayer, and APT; and my directors Joe Cohen and Rochelle Scheib at the Lemuel Shattuck Hospital, Jamaica Plain, Massachusetts.
Dr. De Groot is Assistant Professor of Medicine and Community Health at Brown University AIDS Program Brown University, Providence, Rhode Island and a member of the HIV/AIDS Program Staff at Lemuel Shattuck Hospital. She is also an editor of HEPP News. More information can be found in Anne S. De Groot and Debi Cuccinelli, "Put her in a cage: Childhood sexual abuse, incarceration, and HIV infection," in The Gender Politics of HIV in Women: Perspectives on the Pandemic in the United States, J. Manlowe and N.Goldstein, eds., New York University Press. Also see Jessica Stevens, Sally Zierler, Virginia Cram, Diane Dean, Ken H. Mayer, and Anne S. De Groot, "Risks for HIV infection in incarcerated women," Journal of Women's Health, Volume 5 (4) 1-7, 1995.