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Photo: Peter Mbugua Njenga/Penje Photographers

Photo: Peter Mbugua Njenga/Penje Photographers

By Dorothy Kweyu*

How do parents disclose to their children that they are HIV positive? That is the challenge a participant at a recent consultation on 25-27 November on HIV and adolescents in Limuru, Kenya, faced for years. The middle-aged woman, who probably contracted HIV when it first emerged in Zambia, talked about just how difficult it was for her to disclose her serostatus to her children.

In a blow-by-blow account, the guardian of a son and a nephew told participants from Angola, the Democratic Republic of Congo, Ethiopia, Ghana, Kenya, Malawi, Nigeria, Rwanda, Tanzania, Uganda, Zambia and Zimbabwe the challenge she faced in deciding whether or not to tell the young people that she was living with HIV.

“I had been living with HIV for 10 years and every day, I would come from work and say, ‘Today, today, he must know that his mother is HIV positive’”—only to find her son too happy to be told the truth. “If I tell him, I’ll spoil his mood,” she would argue, before sitting back to wait for the next clinic when the doctor would repeat the obvious:”Your son must know.” She would leave with the promise that next time; the doctor would hear a different story.

This time round, “You find his mouth is that side. He’s not even looking at me and I don't know what has upset him.” ‘If I tell him now, it will worsen the situation’, she tells herself.

When she eventually disclosed her serostatus to the children, it was by pure accident.

Preoccupied with workplace issues, the mother came home one day with her mind full of the happenings of the day and blurted out: “You go and get me those HIV medications.”

A wave of murmurs swept across the Limuru conference room as the mother said: “I forgot that I had not disclosed my serostatus to them. But they went and got the medicines as I said, ‘Oh God! What have I done?’”

She later sat the boys down and told them how sorry she was to have disclosed her status to them the way she did.

“But my children knew. They had known a long time ago. They went to the Internet, they googled, this medication, curious about why mum was always taking it. So, when I told them, the youngest, who is my nephew just said: ‘Mum, that’s not news to us. We know about this.’”

However, her biological son went into a mood, “because for him, it was confirming his worst fears. He had hoped I was taking medication for something else. So, sometimes it’s not deliberate that parents don’t disclose. They have a lot of challenges.”

The parent, who is involved in an advocacy programme for people living with HIV  described disclosure as a minefield people have to walk especially when the child discloses the same to peers at school, only to be discriminated against. “So, there’s that part of protecting you from other people.”

For her, there was never a right time. “When you want to disclose, there’s always something that comes up, so you think, I’ll do it next time or when I come back, and things like that.”

And it is not only in school, but also at home, especially in a situation of discordant couples. How do you tell the children that Mum is HIV-positive and Dad is not? So, when you disclose your status to the children, you might as well do the same to your spouse.

Although she went through a lot of counselling, it was never easy to disclose her serostatus to her charges. Even today, she says, “I still find it difficult to disclose to friends who I don't know, or even some members of my family because I think they’ll remember about that brother of mine who died of AIDS, that is how I'm also going to die. Disclosure it not as easy as it sounds and there are always a lot of challenges.”

A university student from Malawi at the forum spoke about her challenges in taking antiretroviral medication without arousing her roommate’s curiosity. She would wait until her roommate left, and when she did not leave their cubicle, as it sometimes happened, she skipped taking her medication altogether.

Confidentiality was one of the rules set at the beginning of the consultation, enabling the participants to freely share their experiences is a safe space.

In spite of the challenges surrounding disclosure, the older participant maintained that knowing one’s status helped people living with HIV to comply with mediation and protect other people “because we believe those who don’t know are more dangerous in terms of transmitting than those who know.”

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*Ms Kweyu is a Nairobi-based freelance journalist and editorial consultant.