Relationships with Your Children

Many of the problems people with HIV infection have with their chil­dren are, on the surface, the same problems they have with any other rel­ative: how to tell them about the infection, how to deal with their wor­ries.

Problems with Telling

In many ways, telling your children about HIV infection is different from telling most other relatives. People feel responsible for their children; they want to protect them against fear and worry and life’s hard facts. They think of themselves as their children’s safe haven, and they want to avoid bringing uncertainty into their lives. As a result, many people decide to put off telling their children until they have to.

For people who feel and seem healthy, telling their children can be put off indefinitely. Steven has a nice story about a friend, a gay man who in the late 1970s adopted a baby. When the boy was 10, the man became infected with HIV. His doctor at the time told him he might be dead in the next couple of years. So the man decided to put off telling his son and to try to live until his son graduated from middle school. The son graduated. Then the man decided to try to live until his son’s high school graduation. The son graduated. Then the man wanted to live for the college graduation. The son graduated. Now the son is several years out of college, is married, has a career, has never needed to know his fa­ther has HIV infection, and still doesn’t.

People with HIV infection won’t tell, they say, unless they start get­ting sick.

Sometimes, people find that they must tell their children sooner than they had planned, because the children, who always see more than they seem to, sense that their parents are preoccupied. The children worry. Sometimes they suspect the truth; sometimes they come to entirely wrong conclusions. One mother had two children she wasn’t telling about her diagnosis. The children noticed her medications and frequent doctor appointments, talked to each other about it, and decided she was dying of cancer. The children were upset: one child became a workaholic, go­ing to school and then working into the night until early the next morn­ing; the other got into trouble at school. When their mother finally told them she was infected with HIV and wasn’t dying any time soon, they were almost relieved. At the least, they no longer had to deal with uncer­tainty.

Telling your children you have HIV infection usually also means telling them how you got the virus. People want their children to respect and look up to them. They don’t want to look vulnerable or fallible. Most people, however, get infected in ways that society judges harshly: through using drugs by injection or through gay sexual relations.

Edward and his 17-year-old daughter managed to resolve the issue of homosexuality by talking openly and lovingly about his life and his daughter’s place in it, and her relation to his partner. “Now my daugh­ter just accepts it,” Edward said. “She says, ‘Dad is gay and has AIDS.’ She brings her friends to our house. When the kids are around, my part­ner and I hold back our normal affections and don’t use terms of en­dearment with each other.” Sometimes children have more trouble with the situation than Edward’s daughter, and are upset at their father’s ho­mosexuality. Sometimes they dislike their father’s partner.

In general, people find telling the truth works out best. They natu­rally feel sadness and guilt and regret about the truth, and those feelings will complicate how they talk to their children. They find that the sim­plest truth works: the simplest truth does not necessarily go into details of why or how. The parents leave the child with the impression that though they are regretful, they are responsible. They say things like, “You know I used to have a drug problem. At that time, I did things I wasn’t proud of, and I got AIDS.” Children in their teens understand this sort of information best.

The Children's Worries

Children fear abandonment. Younger children, when faced with a par­ent’s illness, will ask directly, “If you get sick, who is going to take care of me? Who will live with me if you go to the hospital?” Older children, though they are bothered by the same questions, try to tough it out, and often they will not ask.

Some children worry that their parents are not caring for themselves well enough. Helen’s son, though he does not know she has HIV infec­tion, sees that she occasionally loses weight and asks her, “You aren’t getting high, are you? You’re eating, aren’t you? You’re taking care of yourself, aren’t you?” Other children worry not only about their par­ent’s health, but about everything else the parent is normally responsi­ble for: bills, rent, mortgage, car, groceries. These children are beginning to see themselves as their parent’s caregivers, and they are trying to take on the role of a responsible adult.

Children often do not express their worries directly. Instead, they act their worries out; their worries are evident only in their behavior. Some children get depressed, some become withdrawn and stop talking, some become unusually aggressive. Parents who see this happening can try to encourage the child to express his or her worries directly. They can also get help from mental health professionals, especially those who deal specifically with families or children.

The Parent's Worries

A parent’s worst worry is whether he or she has unknowingly infected a child. Fathers worry that they have infected their children through casual contact; mothers worry that they have infected their children during the birth process. If the child was born before the mother became infected, the child is almost certainly uninfected. If the child was born after the parent became infected, and if the child does not receive treatment, the child has a chance of also having the virus. Parents do not usually know when they were infected, and do not know if they have passed the virus on to their children. The only way to find this out is to have the child tested. To decide whether to do this, ask, What would be gained by testing? What would be lost? Parents often decide to have their children tested, because a child, if infected, critically needs medical care even when he or she appears well.

Parents with older children are also concerned about their children’s worries. People can often accept that a friend or adult relative worries about them, but they are unhappy to think that their children worry about them. The reversal of the normal role of parents and children makes parents uncomfortable; they feel intensely responsible for their children. The children often understand this without being told, and do what they feel they can do. Some children are less worried about this than their parents are. “I’ve spent more time with my daughter,” said Edward. “I’m very close to her. But now I’m worried because I don’t want to become a burden on her. When I tell her that, she just says, ‘We’ll cross that bridge when we come to it.’”

Parents with younger children—or with children of any age—worry that their own health may prevent them from caring for their children, and they feel a moral obligation to provide for that possibility. They are intensely worried, and they are often more distressed about this than about their own health.

Many agencies offer advice on this subject: the state Department of Social Services, social workers, and such private social services as Catholic Charities, Jewish Family and Children’s Services, and Lutheran Social Services can help. Community-based AIDS-advocacy agencies might also be good sources of advice; some agencies include the services of a “pro bono” (free) lawyer. In any case, to guard your rights as a par­ent, make any arrangements only with the advice of a lawyer.