Hidaya Mugure, age 37, takes her antiretroviral therapy (ART). Photograph by Rachel Muthoni
If only Kenyan society would choose to understand their kin and friends who are HIV-positive, deaths resulting from this virus could be reduced significantly. But the stigma associated with being infected or affected by HIV hinders such acceptance and understanding, and makes many reject their friends and relatives when they are diagnosed.
“Education, social status and religion are the main factors that influence attitude towards HIV,” says Paul Ndegwa, of Ambassadors of Change NGO. “[Some] people are kept indoors once their families discover they are HIV-positive. They suffer bedridden, and some even die.”
Unfortunately, cases of rejection by family members and friends are on the rise, especially among the less literate and poorer communities in Kenya. Such is the case of 37-year-old Hidaya Mugure, whose family watched as her daughter died from HIV-related ailments.
Mugure lives in Bondeni slums in the outskirts of Nakuru town, 150 kilometers west of Nairobi, Kenya’s capital. One of the largest and oldest slums in Nakuru, Bondeni is home to about 2,000 people. Most families live in single rooms that serve as kitchen, bed, and sitting room.
I do not know how many people are HIV-positive in this sprawling slum. But I can attest to having visited about 50 homes in my research, and each home had one or two HIV-positive people. As a journalist I write about issues relating to poverty, HIV, children and women especially in slums and marginalized other areas.
“We are many living with the virus,” says Joyce Nyambura, a community health worker, who is also HIV-positive. “Women will mostly get infected while working as commercial sex workers, men refuse to use condoms, while children are infected by ignorant mothers.”
Mugure had gone to a government hospital in Nakuru, hoping to deliver a bouncing baby. During the delivery, she became weak and it was hard for her to push. She bled and was unconscious immediately after her baby girl was born.
“I regained consciousness after two days, but was so weak and was admitted in hospital for three weeks,” says Mugure. When she went home, her mother and elder sister took away Mugure’s newborn daughter and cautioned her against ever breastfeeding the girl.
It never crossed Mugure’s mind that she was HIV-postive and she thought her mother took away the baby to allow her to regain strength. Unknown to her, Mugure had lived with the virus for more than three years and had even given birth to another child who was HIV-positive.
What Mugure does not understand is why the nurses at the hospital disclosed her HIV status to her mother and sister only. “Though I was very sick and weak, I still feel the nurses should have told me. Maybe they trusted my relatives too much?”
Hidaya Mugure, whose mother kept it secret about her HIV status. Photograph by Rachel Muthoni.
Two years later, Mugure was once again pregnant. She was determined to ensure that no one would stop her from breastfeeding her new baby. “Even though transport was a big problem, let alone the charges I would have to pay at the hospital, I also had developed a negative attitude towards delivering in hospital,” says Mugure. She chose to deliver at home.
This time around, Mugure breastfed her son so faithfully that she did not wean him after the first six months, which is recommended by health nutritionists.
When Mugure’s then-eight-year-old daughter started feeling unwell, she suspected the effects of cold weather. She hopped from health centre to health centre, seeking medical attention for her daughter, whose condition worsened day by day.
“At some point I resorted to seeking help from traditional herbalists, and her condition seemed to improve, but this was short-lived,” says Mugure.
When her daughter got skin rashes, Mugure switched the petroleum jelly she used on her, thinking that the child may have been allergic to the jelly.
It was only after the child became very sick that Mugure went to Rift Valley Provincial General Hospital, where she sought help. “I was told to take her for an HIV test and was hesitant at first, as I thought it was impossible for her to be infected with the virus.”
The fact that her child was so weak obliged Mugure to follow the doctor’s instructions. “I was shocked when I was told she was HIV-positive. It was hard to believe. I cried so much.” Her daughter was recommended for antiretroviral drugs immediately, but she died before swallowing the first tablet.
Life changed for the worse immediately after Mugure buried her daughter. Rumour of the girl’s death spread all over the sprawling Bondeni slums. Some of Mugure’s friends would not even shake her hands, while others stopped talking to her as rumour spread that she too was HIV-positive.
As she mourned her daughter, Mugure decided to go for an HIV test to settle the rumours, just hoping for the best. It was then that she discovered she was HIV-positive, and that her mother had known it all along.
“My mother called me into her house and informed me that she knew my status, but had always feared disclosing it to me, as she did not want to make me sad,” says Mugure.
Wanjiru, who is 65 and was also diagnosed HIV-positive one year ago, says lack of information and fear of stigmatization blocked her from disclosing her daughter’s HIV status to her. She was unaware of the negative consequences associated with her silence.
“I was not as informed about HIV as I am now. How I wish I was! Today, it is me who is living positively. My granddaughter, who succumbed to HIV, would also be living,” says Wanjiru.
Though Mugure feels her child would have lived longer had she known her HIV status, and that her last-born son would not have become HIV-positive, she has since forgiven her mother. “She was the only person who stood by me when everyone rejected me. She encouraged me even if she kept secret about my status.”
“We now understand each other, having been infected. I now understand that my daughter too did not get infected willingly. We share and care for each other,” says Wanjiru.
Mugure is now a peer educator, enlightening HIV-positive people. “I also talk to their families, telling them the need to accept those who are HIV-positive, that even those who do not have the virus are candidates. They too can be affected,” says Mugure.
Still, the level of stigma in the slums is high. Mugure says she often tries her hand in business, but customers disappear once they discover her HIV status. Currently, she makes a living washing clothes at a wage of between Sh50 (US$0.58) and Sh200 (US$2.34) per day. Unfortunately, this is the status of many HIV-positive people.
It is time for the government to step up and sensitize people on the need to accept and support those living with HIV. If only people would choose to understand their kin and friends who are positive, deaths resulting from HIV could be reduced significantly.
In some religions and communities, HIV-positive people are considered a curse. People do not want to get near them. Yet, it is at such a time that they most need sympathy and care.
About the Author: Rachel Muthoni is a Kenyan journalist. She holds an International Diploma in Journalism and Media Studies and has worked in international and local media for the last seven years. She is pursuing a Masters Degree in Communications and would like to tell many stories about under privileged people to change their lives for the better.
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