"One morning I went to the clinic in Meyerton. I had been vomiting, sweating, having diarrhoea, shingles for two weeks," 64-year-old Sbongile Mofokeng* from Orange Farm tells Health-e News.
"I had tried over-the-counter painkillers and drank herbs. But nothing helped; I was getting weaker every day."
At the clinic, Mofokeng was sent to a consultation room where she explained her symptoms to the nurse. She was tested for HIV.
"It was 2013, I was 51 and diagnosed with HIV. My life had changed for good," she says.
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Mofokeng struggled to come to terms with her diagnosis.
"In that moment, I needed support and detailed education about HIV. I wanted to understand how to move on with this HIV. But the clinic simply gave me treatment and sent me home to figure it out on my own," she recalls.
Thirteen years later, Mofokeng remains puzzled as to how she was infected with HIV. "I'm an elderly woman with no sexual partners from my younger years."
HIV support groups
Her local clinic hosts a support group for people living with HIV, but Mofokeng says these are not targeted at the elderly.
"On my appointment dates, I arrive at the clinic, take my treatment and leave. No psychosocial support or HIV education is offered to me.
Mofokeng says while waiting in the clinic queue, she and other women her age use the time to support each other.
"Other elderly women are stigmatised and receive little to zero support in their homes, while others lack a structured family to lean on," she says. "These are sad realities for many elderly women living with HIV."
In 2023, Simon Radebe established the Lawley elderly community group to provide a safe space, psychosocial support and physical fitness for elderly people on chronic treatment.
Speaking to Health-e News, many women members of the Lawley group said they were "never given HIV education at their local clinic, and health promoters at the clinic don't even look in their direction when giving talks about HIV".
They echoed Mofokeng: they collect their chronic medication and go home.
"I would like to learn about HIV, get more information, even about prevention methods. Being elderly does not exclude me from being exposed to HIV or being infected," says Mpumelele Ngwenya (75).
"We should not only be taught about hypertension and diabetes. Knowing about HIV can help us to realise early symptoms and not delay diagnosis and treatment initiation."
Another blind spot in the system is men.
"Men in general are not treated like they belong in the clinic set-up. As an elderly man, all my life I have been feeling excluded in healthcare facilities and awareness campaigns," says Nhlanhla Thekiso (68).
"Even education around HIV is mostly designed for young people, mothers, and children; elderly men are not part of these communications, but we are also affected, if not infected by HIV."
Growing population
As South Africa's epidemic matures and antiretroviral therapy (ART) is more readily available, more people are living with HIV, and they're living longer. According to the more recent South African HIV Behavioural Survey, in 2022, people aged 50 and older made up 14% of those living with HIV. In 2012, this figure was 12.4%.
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The 50 Plus Project is an organisation created to ensure that people with HIV continue to get the necessary support as they age and develop other chronic illnesses.
"I'm not sure where the belief that elderly people are no longer sexually active comes from. This notion is causing elderly women to be overlooked despite their risk of being exposed to HIV and gender based violence," Paddy Nhlapo, a founding member of 50 Plus, says.
Elderly women who received the first roll-out of HIV treatment in 2005 and who are still alive have been "swallowed" by the healthcare system, with little long-term support available, she argues.
"The lack of targeted campaigns, coordinated treatment collections and economic support continues to burden elderly women living with HIV." - Health-e News
*Not her real name
