Living positively: The struggle of being HIV in an uncaring society

Norah*, a youth living with HIV, shares her painful story of living in isolation and discrimination from society.

Her story starts to weigh back from childhood since her infection was a result of mother-to-child transmission at birth.

“I was infected at birth. Throughout my childhood, my mother used to instruct me to take the drugs but never explained to me what it was curing,” Norah narrates.

HIV can be transmitted from a mother to her baby during pregnancy, at birth, or when breastfeeding. The 20-year-old says she came to know about the Anti-Retroviral drugs (ARVs) when she was in Standard Seven.

The revelation of why she was using ARVs came after her visit to a health facility to refill her medication when the medic in charge explained to her about the condition.

“I was told that I was HIV positive but I could not accept the condition. On several occasions, I contemplated suicide. Thanks to my brother who one day saved me on the brink of death,” she recalls.

After counselling and encouragement from family, Norah carried on with her education and joined a boarding secondary school. Her classmates were curious about the kind of medication she took and some even asked.

She openly shared the information about her status.

“One day I went to play and when I came back to the dormitory, I found my box and bed outside. Upon inquiry, the other students told me they did not want to associate with someone who is HIV positive,” says Norah teary-eyed.

That marked the beginning of her woes in school as she ended up moving from one institution to another to avoid discrimination and harassment.

There are other ways through which one can get infected with HIV which include sexual intercourse, sharing needles, syringes, or other drug injection equipment among others.

Mercy*, 27, got infected after engaging in a sexual relationship that left her pregnant. Upon finding out about her status she visited a health facility where she delivered and the doctor placed her baby under newborn ARV regimens.

Discrimination

Back at home she tried to hide her status from relatives for a while before they found out based on the kind of medication she was taking. That’s when she started facing discrimination since her relatives feared that she could get them infected.

“When my cousin realised I was HIV positive, the whole family started hurling insults at me. They refused to eat any food that I prepared. I was separated from my nephew whom I had been caring for. They feared that I could infect them,” says Mercy.

Mercy says her close relatives ran away from her, prompting her to seek refuge in a Good Samaritan’s house. Thanks to a friend who has accepted her status she now engages in menial jobs in Nairobi.

Based on her experience of facing discrimination, she thinks one should only disclose their HIV status to a trustworthy person.

According to a recent report by the National Syndemic Disease Control Council (NSDCC), there are concerns over the infection rates among young adults.

It states that people aged 15-29 years accounted for 61 per cent and 52 per cent of all new infections in 2020 and 2021 respectively. 

Kenya has made commendable steps in the fight against the Human Immunodeficiency Virus (HIV) amidst stigmatisation, isolation, ridicule, and insults that some survivors still experience.

However, there is a glimpse of hope of leading normal lives by taking ARVs every single day as prescribed by the medics.

Ruele Okeyo is the definition of a youthful HIV champion who has decided not to fight a silent battle against HIV.

The 26-year-old tested positive for HIV in September 2020 and is aggrieved about the fact that he got infected after his first sexual encounter.

“I got infected in my first sexual encounter. I wish I had even contracted a curable Sexually Transmitted Infection (STI),” says Okeyo.

Upon learning about his HIV status, he thought of transmitting the virus to others but he instead made a conscious decision to channel the anger he had into something positive. 

This resulted in him starting an advocacy-oriented podcast based on creating awareness of HIV and Sexual Reproductive Health Rights. 

He also uses his social media handles to advocate and create awareness about HIV.

“I have taken my medication in hotels, in matatus, around the National Archives building in Nairobi, in the airport…,” Ruele recounts.

He says his gesture to post photos of himself while using the ARVs has attracted many living with HIV to reach out to him for motivation on how to stick to their medication.

“Stigma still exists to date. My work is to demystify all these notions that people have with regard to people living with HIV and the challenge that stops people from taking their medication,” says Ruele.

The survivors have embraced self-acceptance and are calling on those infected to take up medication while urging those who are HIV-negative to be vigilant.