On World AIDS Day, a woman in Kenya tells of how HIV/AIDS stigma shattered her life and shares the steps she’s taken to rebuild it.
By Zeddy Kosgei
Rachel* was two months pregnant with her third child when her husband committed suicide. She believes he had just discovered he was HIV positive, but decided to take the secret to his grave.
The family was at home in Kilgoris, Narok County, Kenya. “It was a typical morning in our household,” Rachel remembers. She’s sitting in an office chair in Baraka Hospital’s consultation room, sharing her story in Swahili. She rests her stiff interlaced fingers on her lap and continues.
“I woke up, made breakfast and saw the kids off to school. He asked me to go get milk from my mother-in-law’s house.” She returned a few minutes later to find him dead in their bedroom.
Rachel’s life unraveled from there. Her in-laws blamed her for their son’s death. Her friends and neighbours spread rumours speculating why he ended his life; the common theory was that he was HIV positive. Suspecting Rachel was, too, they turned away from her.
Pregnant, she packed up her life and moved with her two children to her parents’ home, three hours away in Munyas—the community where she grew up.
Rachel knew there was a chance she was infected, too. But she was scared of being tested—afraid of being shunned, this time by her family. Her parents knew about her husband’s death, but they didn’t know the reason why.
Then, she got sick. “I had rashes all over me and severe headaches and stomachaches.”
Rachel decided it was time to tell her parents about her symptoms. They reacted through action with her mother accompanying her to a nearby clinic to get tested.
The test verified what Rachel suspected. Unlike her husband, she took control of how the disease impacted her life. She wasn’t going to let stigma further destroy her family. She immediately went on antiretroviral therapy (ART) to lower the chances of transmitting the disease to her unborn child.
In 2015, her daughter was born—HIV free. Relief flooded Rachel, but at seven months old, her daughter rapidly lost weight, became feverish and constantly cried. Rachel feared the worst.
At the time, Rachel was in and out of local health centres battling meningitis, pneumonia and skin infections. Unfortunately, the clinics she visited weren’t well equipped to treat these ailments.
“I would be told that they didn’t have the medicine or that they had run out.” Rachel wanted the best care for herself and her daughter, but didn’t know where to get it.
She told a neighbour she needed a good doctor for her daughter, without revealing her HIV/AIDS status or her true concerns, fearing the stigma disclosure could bring. Her neighbour told her about Baraka Hospital.
Since opening its doors in 2010, Baraka has gained a strong clinical reputation for its skilled outpatient and inpatient treatments, as well as laboratory testing. Rachel decided it was worth the one-hour trip by motorbike to access the hospital’s respected mother and child health services.
She quickly received answers. Her daughter did not have HIV, but was malnourished. The Baraka team put her daughter on formula feedings.
After Rachel admitted she had HIV/AIDS, she was put on an integrated health care plan at Baraka Hospital’s Comprehensive Care Center.
Along with ART, Rachel’s treatment now includes nutritional supplements to build her immune system, health education to better understand how care for herself and prevent transmission, monthly check ups, as well as counselling services.
Baraka established the centre in 2014 to offer high quality HIV/AIDS services to people in remote areas in Narok, who face geographic, economic and social barriers to accessing HIV/AIDS healthcare. In addition to treatment, the centre focuses on ending mother-to-child transmission, treatment for tuberculosis (the leading cause of death for people living with HIV), nutritional services, and counselling services.
Rachel—like many HIV/AIDS patients—faces stigma in large part because of lack of education around transmission and treatment. Like her late husband, many patients don’t know treatment or support is available.
“I have had neighbours who think if they greet me, they will get the disease,” Rachel shares. “My husband was so terrified of what people would think, he decided to kill himself.”
With support of good doctors and understanding parents, she’s not letting the disease hold her back.
Ending the AIDS epidemic is a United Nations priority, agreed to by 193 member states, Kenya included. In a 2016 Declaration, the UN states that the eradication of HIV-related stigma and discrimination by 2020 is essential to achieving the Sustainable Development Goals by 2030.
For 2017 World AIDS Day on December 1, UNAIDS launched the campaign, My Health, My Right. It emphasizes the right to health for everyone and highlights the gaps that exist that prevent people from exercising that right, wherever they live.
This principle underpins Baraka’s comprehensive treatment centre.
Constancia Namweya, a nurse at the centre, says the challenge is to get patients to seek medical help, despite the stigma surrounding the disease. “We have tried to make sure that HIV/AIDS patients and their loved ones know that the centre is a safe space and that they will get the help they need,” she says. “We offer much more than treatment. We educate the community on the disease, as well. By giving as much information as possible on the disease, patients get the confidence to seek help. They and their loved ones know that HIV/AIDS doesn’t have to be a death sentence.”
Only Rachel’s doctors and her parents know her status. That’s why she spoke to us anonymously. She is grateful to receive the medical care she requires, but says more work needs to be done to break stigmas and ensure people know help is available and they shouldn’t be afraid to seek it.
*Name changed for privacy.