'I am not my diagnosis', declare HIV warriors

The beauty pageant at Sagret Gardens in Kiambu County, was an extraordinary one . The participants did not aim to win any price, but the hearts of the society in accepting that although they live with HIV, they have risen above the diagnosis and chosen fulfilled lives; love, family, responsibilities, respect and career ambitions. It was hosted two days before the World Aids Day, last year.

The fashion show was organized by Kiambu People Living with HIV and Aids (Kipewa), a non-governmental organisation that supports people living with the virus. The men and women hit the runway with their novice feet and beautiful smiles, Kiambu People Living with HIV and Aids (Kipewa), a non-governmental organisation that supports people living with the virus. ”.

What was profound from their narrations is that the burden of living with HIV is hardest when you first discover that you have it. It was harder 20 or more years ago, because the pain was doubled by ignorance that fueled societal stigma, rejection and poor access to the crucial antiretroviral drugs.

Today, many empowered voices seek to share their mental freedom and joy as is the case of Kipewa support group.

Kipewa Executive Director, Ms Grace Waruguru says the event was a symbol of triumph over stigma and that the overcomers were meaningfully involved in community work to help newly infected people to live positively.

nation.africa spoke to some Kipewa members who participated in the beauty pageant. Here are their thrilling stories.

Grace Wambui, 38

Ms Grace Wambui fell head over heels in love with a man who reciprocated the feeling. They settled into a happy matrimony nearly two decades ago, unbeknown to both that she had contracted HIV from a previous relationship.

It was only while attending a prenatal clinic in 2003, that the nurses discovered her status and broke the harrowing news after counselling her.

“I was shaken. Going back to the house I did not tell him. I was afraid I’d lose him yet I loved him so much,” says the 38-year-old.

“I kept it a secret but started visiting the clinic and made a conscious decision to protect him and the child.”

It was only when she bore her third child that she saw it well to inform him, rather indirectly. She persuaded him on the importance of visiting the Voluntary Testing Centres (VCT) so they could both know their statuses. They were both tested and he turned out negative. He was shaken to know his spouse’s results.

“It was so hard for him to accept the outcome. That was the beginning of our separation, just like I had feared from the start,” recalls the mother of three boys.

Eventually, they went their separate ways. She left her matrimonial home in Githunguri and moved to Kiambu where she found solace in Kipewa.

“They kept me close when my heart was bleeding. I slowly regained strength and now I am thriving in the support group,” she says.

“Today, I lead 50 women and 30 men living with HIV in the support group. I go to Kiambu Hospital every Wednesday morning to hold health talks and market the support group to newly diagnosed patients. Those who see it well join it and we walk them through the initial self-stigma and other kinds of support,” she explains.

The realisations she has made in being a community health worker is that men do not easily accept to get tested and that that rate of divorce and separation is high the moment spouses realise that one or both are positive of the virus.

In a week, she gets to talk to up to 40 patients about protection from HIV, and between five and 10 new diagnoses on living positively with the virus.

Sarah Makena, 47

The year was 2005. He worked at the coast while she raised their children in Kiambu. He would check on his wife Sarah Makena and share niceties on phone, until something went terribly wrong.

The sweet nothings and giggles slowly faded into ominousness with him repeatedly telling her “mambo sio mazuri, omba” (things are not good, pray), each time he called, but not saying what exactly it was.

She was disturbed and began making her own inferences on what the big issue the love of her life was emphasizing while holding back at the same time. She ticked off the sizeable list of possible troubles, even canceling the chances it could be HIV that had caught up with them, because, in her own naïve analysis of their health status, she and her one and a half-year-old baby then, were negative.

“But on a second thought, I intuitively decided to approach one of my sisters-in-law, who accompanied me to hospital for a HIV test. You can imagine my shock when I turned positive. And not only me, my baby too,” narrates the mother of six; four girls and two boys.

Unbeknown to her, the relatives at the Coast had intimated some news to the family on the poor health of the husband. She learnt that he had fallen ill and upon taking a HIV test, “things were not good”, as he kept saying, but he didn’t know how the wife would react if he broke the news to her.

“No matter who you are, the news of a positive status always comes as a shock,” she says. “Luckily, the nurse who attended to me was not only from my home area, but one of the crusaders against stigma and had gone public that she has the same condition. She took time to counsel and give me hope.”

“The lifestyle had to change immediately. I was advised to stop breastfeeding as that could contribute to giving more virus to the baby. We were started on prophylaxis (septrin and multivitamin) and had to ensure we ate a balanced diet with plenty of fluids and fruits,” she narrates.

In the past, she says treatment using ARVs was only limited to those with CD4 count (a type of white blood cells that play a role in the immune system) of less than 250, unlike today when treatment is given immediately the virus is detected, together with counselling and prophylaxis.

The height of oddities was raising her last born child, who is now an adolescent and on a self-discovery as is normal with the stage.

“She once asked why she alone was on drugs while her siblings were not. I had to disclose to her at a tender age. It has been a tough journey,” she recalls.

Like all the peers, she is a member of Kipewa, “where my healing came from”.

She stood by the husband, unlike many others whose marriages were broken by the virus, choosing to defy dissenting voices and return from her home to take care of him when he was down with opportunistic infections.

And as she boldly catwalks on the runway and then projects a strong, steady voice to tell her story, she is convinced that she beat the negativities that once surrounded her diagnosis.

“The society should learn to accept it, just like we have accepted to live with Covid-19,” she advises.

Godrick Barasa, 58

HIV set in and not only compromised their health at a time the virus was most dreaded and stigma-driven, but also wrecked his marriage, with promiscuity blame-games that were never resolved until his wife died in October 1997.

“My wife had fallen ill and doctors found that she had HIV. This was a time when people were afraid of ARV drugs and would hide them. She succumbed to opportunistic illnesses,” Mr Barasa, who also found himself with the virus, narrates.

The next phase of his life in his Busia home was desolate. He was isolated by the neighbours who dared not visit his home, nor share his cups or seat whenever he was in public place.

He spent eight years agonizing the rejection, low self-worth and loneliness, as no woman would accept to marry him. He had several dates and near-marriages, but whenever the women learnt that his first wife had died of HIV and Aids-related complications, they’d flee in the next available opportunity.

“By then, the stigma was too much.  I was afraid of telling the women I dated that I was positive, so I kept using protection, even when they had accepted to marry me. This was because they would not agree to go for testing, which I considered the best way to learn of each other’s status,” he narrates.

In 2005, he fled from his loneliness to job-hunt in Nairobi where he finally met, not one, but two of his current wives who accepted his status and each other unconditionally to be partners in a polygamous union.

“I met the first lady and we fell in love. This time, I was bold to ask her to visit a VCT Centre with me. She said she would still tie a knot with me no matter the outcome.  That is exactly what she did two weeks later after learning my positive status,” says the jovial man.

She bore him twin girls who are now 14 and lost a two-year-old boy in 2011, but neither the children nor she, contracted the virus, thanks to the clinical advice they follow to date.

Fast forward to 2016, he met another woman, now aged 47, with three adult children of her own. They followed a similar process to get married.

“When I took her home, my second wife welcomed and even housed her under until I finished  building the other house,” he marvels at how lucky he was at a second chance to gain acceptance.

He now lives with the third wife in Gachie in Kiambu, where he joined Kipewa support group, as the second wife cares for the homestead in Busia.

“I advise newly diagnosed people that HIV is not a death sentence. One can still live a fulfilled life by following the doctor’s advice and putting an end to stigma,” he says.

Ithebu Kamau, 48

It is almost normal for touts to be hauled into police cells.  This was the case for Mr Ithebu Kamau, who was in 2008 jailed in Kiambu Prison, for overloading in a matatu.

He told his mother and wife that it would be a waste to raise Sh3,000 fine to bribe the cops when he could just “eat beans” for some days at the cells and save the amount.

As he whiled away time within the graffiti-laden walls of prison, some health workers popped in on a routine visit to test inmates for HIV. By virtue of being one of the prisoners, he obliged to get tested, for routine’s sake.

He was however shocked when, after counselling, which he hadn’t paid much attention to, he got a positive result. The father of two fell into denial.

“I refused to take my medicines. They soon discovered that I was evading drugs and the commissioner of prisons ordered that I be taken to Kiambu Hospital. I was only allowed back to prison after I promised to take drugs,” Mr Kamau recalls.

Around the same time, his mother, who had been accumulating the fine, bailed him out.

With a heavy heart, he broke the news to her, repeatedly saying “I was tested mum, and I am positive”, as if the more he said, the less heavy he would feel inside.

Tests were also done on his wife and two children. The duo’s child returned a negative result, but the wife was not lucky. Just like he had reacted, she was bitter, distraught and in denial that he refused to start-off her medication.

“We broke up immediately,” Kamau recalls.

“But the few times I meet her, I can conclude that she finally decided to obey the prescription, because she appears strong.”

Kamau joined Kipewa through links from Kiambu Hospital, and is instrumental in helping others like him.

“Initially, stigma was too much. But when we come out and show our faces, it helps many people accept themselves. I am no longer afraid, I have built a lot of confidence. I am not my diagnosis,” he says.

[email protected]

[email protected]