Choose right time to talk about children’s status
IT WAS the only time she ever saw her daughter, Samantha*, cry.
Marie’s* own eyes fill with tears as she recounts the story of the day she and her daughter had gone together to test for HIV.
Seeing her mother’s tears when her own test came back positive, Marie’s usually unemotional daughter broke down.
“That’s why I didn’t want to tell her.”
But Samantha’s status was not news to Marie.
Marie had known her daughter’s status for eight years. Since the day after she discovered Samantha was being sexually abused.
Samantha was four years old. She had complained before of not feeling well at times, but Marie never imagined her daughter not feeling well could be due to sexual abuse.
But when Marie came home from work to find her daughter bleeding and with soiled panties, she had no doubts as to the reason for Samantha’s complaints.
After police involvement and several trips to the hospital, things entered into a state of normality for the family, except Samantha was taking daily medication without a clue as to why.
“She would say she was the weakling in the family,” says Marie, whose other children do not have HIV.
The year Samantha was to turn 12 and could test for HIV on her own, Marie suggested they test together to the clinic. She wanted to be with her daughter every step of the way.
According to Nataly Woollett, the technical head of counselling and prevention at the Wits Reproductive Health and HIV Institute, most caregivers choose to disclose HIV positive status to children around age 12.
Like Marie, caregivers know that at that point the children can go and find out for themselves.
Whenever they choose to disclose, Woollett says, there should always be a plan.
“I think that many people don’t disclose properly. Or they’ll disclose in anger or inadvertently to punish kids. We try and encourage caregivers to start disclosing as young as they can, as early as they can,” Woollett says.
Caregivers may choose to wait to disclose, Woollett says, because they transmitted the virus.
“If the caregiver is the mom who actually transmitted the virus, there is a lot of guilt. People beat themselves up a lot,” Woollett says.
In addition to the guilt, comes shame. There is a lot of stigma surrounding the way the virus is transmitted so many caregivers will hesitate to tell because it might bring shame to the family. This selfstigma will then be transmitted to the adolescent, she says.
Some kids, for example, may tell friends they have a heart problem or other medical condition and use that as the reason for regular medication and trips to the doctor.
Unfortunately it is also common around the time of disclosure, Woollett says, that children start to have adherence problems with their treatment because the caregiver will stop helping with treatment after they disclose the positive status. Caregivers sometimes feel that revealing the truth also relieves them of the responsibility of attentive care.
Marie has taken the opposite approach.
After they tested together, the two went to counselling together. Samantha is now 17 but Marie still makes sure she takes her medication daily.
Now that Samantha is at dating age, Marie fears for the teen.
She wonders how she will negotiate romantic relationships with a positive status.
The chronic disease will follow her for the rest of her life.
But just as she was as a kid, Samantha does not open up to Marie much about the future.
Fighting back tears, Marie concludes, “I don’t know what’s going to happen.”
* Not their real names