"This is a mom with three children who is painfully debating whether to tell them she is sick. This little boy inadvertently found out that his dad has AIDS and since then has been constantly getting into fights at school. This mom talked with me for months about disclosing to her daughter but now she's in intensive care and the grandmother doesn't know what to say to her." A few years ago, reports like these began surfacing regularly during our medical rounds at the Center for Special Studies, The New York Hospital's HIV Primary Care Center. Parents who were HIV-infected seemed to be experiencing great turmoil about what to say to their children regarding their illness, if anything at all. As health care providers, we heard their struggle and felt their frustration and fear. The problem only increased with time as more and more women with children became infected.
Disclosing an HIV diagnosis has been an issue of primary concern since the beginning of the epidemic. Public fear, ignorance, and discrimination have combined to force HIV-positive people into the closet often to cope with their illness alone or with limited supports. As the disease has made its way into the world of families (most often to single mothers and children, but fathers are included here too) new concerns about disclosure have arisen: Should you tell a child? When should you tell a child? How much should you say? Is the truth always best? The questions seem endless and the answers unclear.
As we thought about the best way to help parents at the hospital, we considered the idea of a support group focused on disclosure. In an ideal world, parents could come and talk to others who had "been there, done that" (experience often speaks louder than professional prescription). In that ideal world, there would also be affordable child care and dependable transportation which would allow parents to easily attend such groups. We all know about the real world, however, and a support group offered in the context of parents' already overwhelming schedules (including various medical appointments for oneself and one's children, daycare, school, work, family obligations, DAS, Medicaid, housing problems, and a night at the movies if you're lucky) is a good idea but not usually the priority. So we opted for the next best thing: a videotape profiling real people and their stories -- examples of successful and not so successful disclosures, examples of parents who are thinking about telling or not telling -- the real life stuff.
The result is a 25-minute tape entitled "Don't Shut Me Out: HIV-Positive Parents Struggling With Disclosure" (available through The New York Hospital, 212-746-4417). The tape conveys that disclosure is possible, and in most cases, preferred (there is a definite bias presented towards telling). Hopefully, parents who watch it will relate to the struggle and learn from the experiences shared very openly.
As a social worker and co-producer of the tape, I had the privilege of interviewing approximately 40 parents, along with some of their children, about their experiences regarding disclosure. Families were quite honest with me about their struggles and taught me a great deal about the process of telling or not telling a child about a parent's HIV diagnosis. What I learned most is that each situation is indeed unique and a parent, knowing the child best, is the ultimate judge of what to say. [This article is by no means exhaustive. It is just a piece of the issue based on my experience with certain families. I admittedly leave out the entire discussion of telling HIV-infected children about their own illness as this was not the subject of the project. That topic is deserving of complete attention and could not be adequately addressed in the context of this essay.]
The most common experience relayed to me by parents who were diagnosed with HIV was the struggle: "What about the children?" Only one parent I met reported no conflict in telling. As soon as she found out about her illness, she informed her 12-year-old daughter without skipping a beat. She said to her daughter, "We'll take two weeks to be sad, but then we don't have time for that. We've got to pray and get busy." Most parents however spend a lot of time in conflict about what to do.
A big concern is that knowing a parent's diagnosis will rob a child of his or her childhood. Will a child ever be the same after she knows her parent has HIV? Will a child lose the carefree innocence that is the precious gift of those early years? William talked to me of his fears of disclosing to his ten-year-old son, David. He worried that David wouldn't want to go out with his friends anymore, that he would cling to his dad's side and not want to play baseball, his favorite activity. He feared David would have nightmares and no longer sleep peacefully, burdened with the knowledge that his dad was sick. Janet talked about this too: "Is she gonna sit in class all day and say 'My mother has the virus'?" Janet also expressed a common thought parents have, "Why would you want to tell someone something you know is going to hurt them?" Especially if that somebody is your child.
Parents struggle with the fear that their children will hate them or abandon them once they learn the news. Many parents have not been able to care for their children for years due to addictions, financial problems, or other prohibiting circumstances. They work hard to regain custody of their children only to find out they have an illness that threatens the family stability again. Anna (not her real name), for instance, just had her children back from foster care for two years when I met her. Her children had experienced a lot of upheaval and chaos in their early years. Her younger child had lasting emotional difficulties while her teenager had expressed a lot of disdain for people with AIDS. Family life was beginning to settle down a bit when I asked Anna about disclosure. "I don't know if I ever want to tell her anything. What for? What good would it do?" Anna felt guilt at having left them once and could not imagine injuring them again with the information that she had HIV. Also, she greatly feared that they would hate her or leave her. She could not risk this rejection.
For some people, disclosure is but a small part of a greater issue: communication. Parents who have not established supportive, open relationships with their children, who are not able to talk with their children about common tough topics like peer pressure, drugs, or sex will likely not have solid ground on which to begin an HIV disclosure discussion. One father, Jack, had been estranged from his children for years on and off and only recently had begun developing relationships with them. His struggle was poignantly expressed when he asked how he could possibly tell his son he had HIV when "I haven't even told him I loved him...not that he remembers."
Sometimes parents can't talk about their diagnosis with their children because they are still working to accept it themselves. These days, having HIV does not necessarily mean being sick or feeling sick. For some people, a lack of symptoms can support a denial of the virus. I have heard many parents say "I will tell them later, when I get sick." In certain cases this strategy makes sense. In others, it perpetuates an avoidance of the issues.
Often there is outside pressure to tell or not to tell. I have spoken with many parents who are urged by relatives not to disclose to a child, that it is not necessary and would only hurt the child. Conversely, often well-intentioned people (including we professionals) may push parents to disclose before they are ready because they believe children should know the truth. The voices of others often drown out a parent's own intuition about what is best for a child. And unfortunately when a parent is in doubt, the influence of others can be decisive.
It's a Process
One thing I learned in talking with parents is that disclosure often is a process and not necessarily a one time-event. The process occurs both for the parents and the children.
Parents who seemed to have the smoothest disclosures had spent time preparing in advance. Those who had educated themselves about the virus, had talked about disclosure to friends or professionals, had exposed their children to HIV-related information and/or people with HIV, appeared to fare best overall. By the time Sandra told her three boys, she had spent months discussing disclosure with her caseworker and dropping little hints to her children along the way. When the moment came to tell them about her diagnosis, she was nervous yet ready. The result was an honest discussion of Sandra's illness. An ongoing dialogue has continued with her sons ever since (see sidebar).
Conversely, Petra disclosed to her teenage daughter, Lorraine, on impulse. She was told by her doctor that she and her baby were infected and, in a state of shock and panic, knowing nothing about the disease, she rushed home and told Lorraine. Without information or support for herself or her family, the disclosure resulted in disaster with years of hostility and estrangement between mother and daughter. Fortunately, time has healed many of these wounds for the family.
The good news for parents is that understanding what it means to be HIV-positive is an evolving process for children. A parent may feel she is making a devastating statement by telling a child about her HIV status only to have a child ask one question and then return to his activity without much reaction. David disclosed to his son, Jamar, when he was nine years old. Although Jamar had a sense that his father was sick, he didn't actually understand the complexity of the situation until years later.
David described this as a "safety mechanism," that children will block out information they are not yet ready to handle. David's HIV eventually made sense to Jamar at 12 years old when he was doing a report on the virus for health class (these reports seem to be a common entrance into disclosure discussions for parents). While working on his project, Jamar came home from school one day and said, "Dad, what is HIV? Do you have it?...Oh, so that's what you've been trying to tell me." Developmentally, Jamar had reached a point where he could absorb the information about his father's illness.
Wouldn't it be easy if there were a formula for disclosure? Wouldn't it be great if we could say "tell your six-year-old this much at this time, your twelve-year-old that much...and it will all work out fine." Unfortunately, a lot of parents' fears do come true. Sometimes children get anxious and clingy and don't want to go to school or leave a parent's side. Sometimes children get depressed and cry and can't sleep or focus on homework or enjoy themselves. Sometimes children get angry and start fights with peers or run away or use drugs or get pregnant. Sometimes children slip up and tell the secret they promised to keep about a parent's HIV. Parents shared stories about all of these dreaded scenarios with me.
But when asked, the parents who disclosed were pleased they had. And the children responded similarly, most saying they would rather know than not know, and that they would prefer to know sooner rather than later. One seventeen-year-old, Stacey, was told about her father's illness shortly before his death. She was angry -- less about his HIV and more about the secret he had kept from her for so long. Not knowing sooner, she felt deprived of the extra days she would have chosen to spend with him and of additional time to work through her feelings with him. She thinks it is better for a child to know early "even though it will be hard, than for a child not to know at all. Something happens, and then they have to know, and then they're gonna be angry and upset and hurt and confused all at the same time, which is a lot worse than working it out slowly and going through the process." Stacey's love for her father was never lessened because of the disclosure. "He was my dad, and one minute before he told me he was my father, and the minute after he told me he was my father. So he didn't change in any way."
Dr. Ladd Spiegel, a child psychiatrist, consulted with our team on the videotape. He supported the idea of disclosing to children whenever possible, reminding us that children are very resilient. They are also quite perceptive. Often they are aware that something is going on when a parent is ill, despite the best efforts to protect them from the information. If children are not told the truth, their fantasies tend to run wild with imaginings worse than the reality. The revelation of a parent's HIV can come as a relief to children, making sense out of disjointed observations like medicine bottles, frequent doctor appointments, whispering on the phone, a parent's lack of energy, etc. Also, young children live in very self-centered worlds, believing they have magical power to cause or control events. Disclosing an HIV diagnosis takes the essential step to assure a child that the "trouble" that has gone on in the family is not his or her fault.
Life is hard. HIV is part of it for children and for adults. There is no easy way to disclose, no best time, no ideal circumstance. The one guarantee is that a child will react with some painful and difficult feelings. The comfort to parents often comes in being able to be there for their children who must cope with some pretty grown-up stuff. Whether parents disclose earlier or later, ultimately the children will have to deal with the reality of the virus. Since the parents are the ones who know the children best, it makes sense for them to disclose, as opposed to children hearing it from someone else. If parents do so early, while they are healthy, they will be able to support their children through the adjustment period.
In most of the families I met, a sense of balance and acceptance was reached at some point following the disclosure. Often it was after a lot of pain, hard work, therapy, and time. Then the families got back to the regular business of living. Many of them grew closer for it, and most of the children and parents displayed a strength as a result of their experience that is strikingly courageous and admirable. I thank them for sharing themselves so openly with me.
In 1988, Sandra received a call from her ex-husband. Having just discovered he was HIV-positive, he urged her to get tested. When her results came back positive too, Sandra thought her counselor was joking. "I'm fine," she said to herself. Stunned and numb, she returned home and pushed away the thoughts of her diagnosis. Within a few months time, her HIV had become mentally erased and her life resumed unaffected. There was never a thought of telling anyone, least of all her three sons: Isa, 7; Mikey, 3; and Eric, 2.
HIV was not Sandra's priority. For a year and a half she was homeless, separated from her husband, trying to keep a job and make a life for her family.
In 1990, Sandra gave birth to another son, Yahuda. A year later he began having medical problems and doctors eventually suggested testing him and Sandra for HIV. With her second positive HIV test, Sandra's denial was broken. After a month of depression, she started to address the reality of her health situation, went to a clinic for medical attention and, attended a support group for women with HIV. The issue of telling her children then began to play on her mind.
Little things started building up. Sandra would "go crazy" if she cut herself and the boys came near her blood. There was constant hiding in the house. She told the boys her medicine was vitamins. She went outside to speak with her caseworker and nurse during home visits. She had trouble explaining why she and Yahuda had so many doctor appointments or why there was a homemaker in the house. "It was just such a hassle to keep that a secret."
Sandra spoke regularly with her DAS caseworker about disclosing to the boys. She didn't want to tell but, in a way, felt she had to. Isa, then 11 years old, was asking questions. She knew she had to say something but she didn't know what and was concerned about how they would handle it. Sandra's adult family was aware of her HIV. Her mother discouraged disclosure, fearing that the boys would worry, wouldn't focus in school, would get depressed. Sandra's sister and friend expressed similar concerns. Nonetheless, her sister offered support by volunteering to be present when Sandra told the boys.
The disclosure happened when Sandra least expected. Mikey, 7, came home from school one day and said to his mom "I know how you get AIDS...sexual intercourse." With butterflies in her stomach, Sandra seized the opportunity for a family meeting. Sitting down with the three boys, she posed a question, "How would you feel if somebody in our family was really, really sick?" They asked, "Sick how?" "Real sick -- like cancer or AIDS." When Isa looked at Sandra and said "Do you?" Sandra knew that if she backed out of it then, she might never tell them. She took the plunge and told them that she and Yahuda, as well as Mikey and Eric's father, had the virus. The younger ones thought she was kidding. Isa just stared and said nothing. Then the questions came -- how, when, where, with whom. And Sandra told them.
All the boys became very sad about their little brother and feared he would die. Sandra assured them that for the moment everyone was fine. She instructed the boys that this was a secret and told them who they could talk with about the HIV: family members who knew. Isa was angry. He wanted to know how long his mother had been infected and why she hadn't told him sooner. Sandra answered him as honestly as possible.
Family life was not smooth. Isa wanted to stay home with his mother and got into fights with peers. He needed to repeat a grade in school. The boys received counseling, both individual and group, and the family had therapy together. Isa eventually began abusing marijuana. Yahuda died in 1995. Mikey and Eric's father died this year. It has been a struggle for everyone.
Sandra has no regrets about the disclosure. It put to rest many of the questions her sons had about the secrets in the house. Although it wasn't planned, Sandra saw it as happening rather easily. She says, "I told them when they were little, now it's no big thing. They have grown up with this." Sandra believes it's easier to tell children when they are younger. They may not remember the disclosure, but they grow up with AIDS as a fact of life.
The family these days is doing well, accepting Sandra's HIV as normal for them and continuing on with the business of living. Isa is drug-free and receiving substance abuse treatment. Mikey and Eric see a counselor weekly. They all also go to school, play football and Nintendo, and horse around with each other like other brothers do. The work and the pain aren't over but they aren't the predominant theme in this family. A sense of openness, acceptance, hope, and love is what clearly shines through.
Back to the October 1997 Issue of Body Positive Magazine.