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Living positively

Danielle Vella

31 October 2016 – Joseph Kirimi has intimate knowledge of the deadly toll exacted by AIDS. The Kenyan man lost his first wife and three children – the eldest was nine years – to the disease. He survived because he dared to seek out the truth about his own HIV-positive status.

“My first-born son died when he was 9 years,” he says. “Then I realised I was unwell. First we thought it was sickle-cell anaemia but then my wife started to develop symptoms of HIV. I told her we must go for an HIV test. I said, ‘this is a thing that is killing us.’ But my wife refused; she insisted it was witchcraft.”

By the time Joseph persuaded his wife to seek medical help in Nairobi – they came from Meru County – she was already dying. All this was years ago, in the nineties, when denial, stigma and frequently inaccessible medication made AIDS a death sentence – far more than nowadays. 

Joseph himself was immediately put on antiretroviral drugs (ARVs). “Those days we had to buy the drugs, it was very hard,” he says, recalling how the price gradually dropped to zero in 2004, after he had been taking ARVs for six years.

Joseph generously tells me his story as we sit in the Nairobi office of NEPHAK (National Empowerment Network of People living with HIV/AIDS in Kenya), where he has worked for years as office assistant. He has come a long way since those grim days of death and despair; today the 55-year-old man has remarried and he is an HIV peer educator. He takes ARVs regularly, “I’ve never been tempted to stop”, and says he has been well since he started his medication.  

But Joseph has forgotten nothing, not a single lesson he paid an excruciatingly dear price to learn. Joseph’s credo is “living positively”, which he elaborates as being open, fearless of stigma, and as knowledgeable as possible about the HIV virus that inhabits his body. 

“I have always been open in my status,” he says firmly. “I have even spoken on the radio. Everyone in my home area is aware of my status, including the chief and the sub-chief. I married again last year, my wife is also positive, and we have a baby boy who is healthy.” 

His frankness has enabled Joseph to seek out not only treatment but also all-important information. “It is very important to know about HIV otherwise you live in darkness,” he says. “Only when you have knowledge and know-how, will you know how to address HIV. I got this knowledge in trainings … The summary about HIV is living positively because when you do this, you take your medication, prevent re-infection and you do not infect others.”

Joseph encourages others to adopt the same credo. Apart from being a peer educator, he set up a support group in Meru, called South Iment HIV Action, when he realised that “we had people who were infected and who were trying to hide their status”.

Sometimes he cites his own tragic experience as a wake-up call, like the time he met a man who was fearful he had HIV: “I told him, why don’t you get tested? I lost my children, learn from me, and have a test. So he did; he tested positive and joined our group.”

Joseph’s experience underscores a reality among people living with HIV, which came to light in research coordinated by AJAN about the quality of HIV and AIDS medical care in Africa. Basically, there is an inseparable link between self-acceptance and seeking treatment and support. 

Respondents in the research who were comfortable with their HIV status, “I’ve nothing to hide”, had no problem to open up to ask for medical help. They were eager to have as much education as possible about AIDS and to reach out to others. Their thirst to know more was directly linked to the desire to be well. Conversely, a minority of people gripped by self-stigma and fear of stigma were reluctant to approach healthcare staff because of feelings of shame, “fear of discrimination” and being judged.

Of course there can be very compelling reasons for such fears. Joseph thanks his lucky stars that in 18 years of taking ARVs, he found only “very, very friendly” doctors who never stigmatised him. “I really praise God for that,” he says fervently. “The clinic where I go now in Nairobi, the staff is very friendly to me, I am satisfied, they take us as human beings.”

However Joseph is only too aware that others are not so fortunate. He cites a recent case that worries him: “My aunty has severe side effects taking ARVs. She cannot go to the hospital because she has to pay transport so she goes to the nearest health centre. Confidentiality is a problem – they will see and say, ‘so-and-so tested HIV-positive’, you know, gossiping.”

The insidious impact of stigma against people with HIV remains prevalent, in some places more than others. Joseph adds: “I have seen people committing suicide because of stigma – they cannot bear it, it is too much pressure… they say why me? Some families deny members living with HIV their property – their reasoning is, ‘you are going to die, so why do you want a cow, a plot, what for?’ But all of us, with or without HIV, we are all going to die. So where is the difference?”

 

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