When she was 14, Martha Clara Nakato’s twin brother approached her and said, “Martha, I think I messed up my life.” He then told her he had had unprotected sex with a classmate. Nakato says he was nervous and scared. He told her he wanted to test for HIV.
She escorted him to a health centre in Kamwokya, the slum where they lived. While there, she decided she would take the test too, even though she was still a virgin.
After 20 minutes or so of waiting, her brother’s results returned negative for the virus that causes Aids. But there was a delay in Nakato’s results. After waiting for another hour and a half, her results also came, but the nurse told her that she was HIV-positive.
“Trust me, the first time I heard those words I froze. I felt like it was the end of life,” she says.
Nakato is one of the millions that were born with HIV during the height of the epidemic in the 80s and 90s. She was unaware of her status until that fateful day 14 years later.
As these children enter adulthood, they struggle with their identity, school and relationships like everyone else, but they must also take daily medication, live with side effects, endure personal and societal stigma and accept their positive status.
These challenges make their lives difficult. But the heartening aspect to these stories is that — they are alive.
Dr Emmanuel Luyirika, the executive director of African Palliative Care Association, says stories of children who have survived with HIV are one of the most exciting and uplifting stories of the epidemic.
While Luyirika is positive about medical advancements, he recognises the struggles people born with HIV have faced throughout their lives. He says they started frequenting hospitals and are on antiretroviral drugs (ARVs). “Aside from that, these children have grown, and are thriving like anybody else,” he says. “HIV-positive children are segregated in their schools and discriminated against by potential employers even though they are not different from any other child born with any other disease or abnormality,” he adds.
Now 21 years old, Nakato recalls that moment in the clinic when the nurse explained her positive result. Surely they had mistaken her results for those of her twin brother. After all, he was the one who had had unprotected sex, not her. She called her brother and told him that the results must have been mixed up. The nurse had to take the test again.
Once again, her brother’s test was negative and hers was positive. “I could not stop crying, and my brother was telling me ‘Nakato, tell me, have you ever had sex?” she says. “Dad is going to kill you. Dad is going to beat you up.”
She did not know it at the time, but her mother had died from Aids-related causes just five years after her birth. However, her father had always said that she had died of lung cancer. Nakato says her father might have lied to avoid scaring her, but the deception only left her confused and disoriented when she tested positive.
As her brother predicted, her father screamed at her when he read the results. Her stepmother took her aside, consoled her and told her how her mother had actually died due to HIV related complications.
It was only after her stepmother told her the truth that it all made sense. But that truth came with the bitterness that she was the only one of her seven siblings born HIV-positive. “I was even scared of death because I knew anyone who had HIV dies,” she says.
Lewis Denis Bukenya, the deputy director of the Naguru Teenage Information and Health Centre, which mostly educates teenagers on safe-sex practices and overall sexual health, but also advocates for acceptance of those who are living positively through different clubs.
“I think one of the key challenges is that many people did not know, and most still do not know how to deal with adolescents’ issues that are associated with young people born with HIV,” Bukenya said.
“For instance, how do you speak to these people who are now becoming sexually active while also HIV-positive? What information do you give them? Are they supposed to be in relationships or not because they have HIV?” he asks. These are the questions he says have yet to be determined as these children age into adulthood.
And so, the parents have little support as they raise HIV-positive children. Their involvement is an area that Bukenya’s organisation grapples with, especially with fathers.
From 14 to 17, Nakato took only Septrin to protect her from opportunistic infections. In addition to the medication, she dealt with stigma.
“I was an outcast,” she says, adding that she went from being top in her class to the very bottom. She would think about death and hear voices. “It really changed me, and I became this aggressive person, this bad person, who wants to commit suicide all the time because I never saw a future,” Nakato says.
She attempted suicide eight times. Each time she would go to sleep expecting to die and each of those times, she woke up alive. After being urged by nurses, Nakato’s father took her to The Aids Support Organisation, where she met other young people like her. She realised that her life could be worse when she saw many girls with visible illnesses such as skin rashes.
Although it was her first time at the organisation, Nakato was nominated the group speaker for the day. It was now her responsibility to represent the young people to the board. They saw her potential to lead and through this she met Dr Micah Phillip Kulubya who became her doctor and mentor.
He taught me to accept my status and inspire other positive people,” she says.
Suicide and HIV
Brian Ssensalire, the community liaison and capacity officer for the Uganda Network of Young People Living With HIV& AIDS (UNYPA), says suicidal tendencies are common with people who are born with HIV when they reach the age of seven to 14. He says they often display these tendencies because they feel like society, or even their parents, do not want them. “This is especially true in cases similar to Nakato’s, where a person is the only one of their siblings born with HIV,” he says.
UNYPA provides young people who are living positively with any services and support they require. When children start antiretroviral treatment, they are more vulnerable to side effects than adults, Ssensalire says. An adult has a stronger immune system that is capable of coping with the side effects.
Adults, he says, are also able to clearly communicate with health workers about exactly what side effects ail them. Some of these drugs, according to Ssensalire, can actually affect the progression and effects of puberty. Some boys develop enlarged breasts, and some girls begin menstruation earlier than they should.
Ssensalire says many of these people begin struggling with two problems at this stage; depression and fatigue.
They suffer from depression after a childhood of being lied to and growing up in an atmosphere of stigma.
“People born with HIV, struggle with fatigue. After a lifetime of daily medication, they just stop.
This can have severe consequences such as developing a resistance to their current medication and severely lowering their CD4 count, which is necessary to combat the HIV virus,” Ssensalire adds.