The dark days of the HIV pandemic are over, but patients still face social stigma and emotional distress that can push them to stop treatment or even into a deep depression. Hear it first-hand from people who’ve experienced it.
Resource details: Bhekisisa Webinar, AVAC factsheet, UNAids fact sheet.
Publication title: HIV and mental health: The impact of lifelong medication, stigma and discrimination.
What the webinar is about:
Over the past three decades, an HIV-positive diagnosis has evolved from being a death sentence to a manageable chronic condition. But that doesn’t mean living with the virus is without its challenges. This webinar examines the experiences of three people with HIV who have worked their way through stigma, the side-effects of antiretroviral treatment and living with a chronic condition. Bhekisisa’s editor-in-chief, Mia Malan, is in conversation with the prominent HIV clinician, Sindisiwe Van Zyl, and nurse clinician, Lebalang Angela Motsusi, who lives with HIV. Also on the panel are Thanduxolo Doro of the HIV non-profit, the MenStar Coalition, and activist Saidy Brown, who found out she was born with HIV when she was 14 years old. Brown lost both her parents to the virus.
Watch the full webinar here.
Life with HIV: A lifelong journey alongside stigma and discrimination
- Thanduxolo Doro was diagnosed with HIV in the early 90s. He says it was a painful time with people living with HIV often being treated as outcasts. “People were discriminated against; people were stigmatised. Literally, if you were known to be HIV positive, you were mocked. If you were young, and at school, you were taken out of school by your parents saying they cannot invest in a person who’s dying anytime soon,” he says.
- About 30% of people with HIV in sub-Saharan Africa also have depression, according to a 2014 review of 13 studies on the topic published in the Journal of Acquired Immune Deficiency Syndrome.
- Poor mental health has a profound impact on people getting treatment or adhering to treatment, argue researchers in the South African Journal of Psychiatry.
- Having a medical background and an understanding of the virus does not make a person with HIV less susceptible to depression, says nurse clinician Lebalang Angela Motsusi. She explains: “As I was diagnosed, the first thing that came to my mind was the end. I thought to myself being in a nappy, myself being helpless, having all those opportunistic illnesses, so it was really very difficult and I got depressed. I was very suicidal. It didn’t help that I was working in a hospital environment, because I knew exactly what to mix or what to get in the hospital. To make it quick and painless.”
- Even today, Motsusi says she’s often shocked by the attitudes of her colleagues towards HIV-positive people and cautions that health workers should speak respectfully about people with HIV — even when they’re not around. Motsusi remembers what a colleague, who knew she was HIV-positive, said after treating a HIV-negative man whose partner was HIV positive: “Is that guy mad? Did he just say that he’s HIV negative? But he’s dating an HIV positive woman.”
- HIV clinician, Sindisiwe Van Zyl, says this kind of attitude is an example of the stigma that continues to exist today. It leads to people becoming isolated and wary of sharing their HIV status with others.
- She explains: “You’ll be surprised at how many people are living with HIV. There are some people that haven’t disclosed to their family members, some people that haven’t disclosed to their partners and they’re carrying this in their hearts on their own. When you ask them, ‘Why haven’t you told even your best friend or just one person that can walk this journey with you?’ [The answer is] almost always around fear and the fear of being stigmatised.”
- There’s research to back Van Zyl up. Fear of stigma and discrimination makes people reluctant to get tested, disclose their HIV status and take antiretroviral drugs (ARVs), shows research published in the Journal of the International Aids Society in 2013.
[WATCH] ‘Because of you’: Saidy reads a letter to HIV
- Saidy Brown was born with HIV and found out her status when she was 14-years-old — both her parents had already succumbed to the virus.
- Brown says she needed time to accept her HIV-positive diagnosis. “It took me about four years to even start disclosing to the public. It took a lot from me having to reaffirm myself and reassure myself that as much as this is life-changing — my life doesn’t need to stop. I had to remind myself: ‘Your life is altered, but it’s not the end’.”
‘Men have this thing called ego’: Why men feel they don’t belong in clinics
- Health facilities need to be more male-friendly, says Thanduxolo Doro from the MenStar Coalition’s MINA campaign, a project that aims to get men to HIV care and to keep them in treatment.
- Researchers have found that men are uncomfortable with female clinic staff.
- “Men have this thing called ego,” Doro says. “They step into a clinic and there are mostly women and babies and they say the environment is not conducive to them.”
- The way the health system communicates with men is crucial, Doro says. “We [men] fear being laughed at. We fear not being accepted.”
- It’s not helpful when health workers call people who lapse on their HIV treatment ‘defaulters’, Doro warns. “If I have defaulted once, there’s no reason to label me. [When I come back to the clinic], I need help. I realise that I’ve done wrong and now to label me is to chase me away from the clinic.”
- Doro says as a patient he’s also felt like an outsider in a clinic, but he’s determined to focus on sticking to his treatment. “[A few years ago] I wanted to be healthy. I went into the clinic, I found the same environment that other men are complaining about. I told myself I’ll remove the clutter. [I’ll] take what I’m here for and go take care of my health.”
- Men made up a third of the 200 000 new HIV infections recorded in South Africa by the middle of 2019, according to University of Cape Town (UCT) research released in 2019.
- Although women are more likely to contract HIV, men are less likely to access treatment for it. By 2018, for example, 65% of HIV-positive women were accessing treatment, compared to 56% of men with HIV, according to UNAids data captured for AidsInfo.
- The UCT report also found that men made up more than half the approximately 74 000 HIV-related deaths during the same period.
Vaginal birth and breastfeeding: HIV-positive women have the right to both
- HIV-positive pregnant women and mothers continue to face discrimination and are in some cases prevented from giving birth naturally or are discouraged from breastfeeding.
- This is something the HIV clinician, Sindi van Zyl, often confronts in her work. She says there is no reason for an HIV-positive woman, who is virally suppressed and has an uncomplicated pregnancy, to not give birth vaginally or to not breastfeed. When a person with HIV takes their antiretroviral medicine (ARVs) correctly, they normally become virally suppressed. This means that the ARVs have reduced the amount of HIV in their body to such low levels that most HIV viral load tests can’t pick up the virus.
- “You know, the hashtag is U=U. Undetectable = untransmittable. And it says that if you’re HIV positive, and you’re taking treatment and your virus is undetectable, you cannot transmit HIV to your partner … during condomless sex or to your baby during pregnancy or breastfeeding or labour. So, it’s important for us as healthcare professionals to keep making sure that we share that message with our patients,” says Van Zyl.
- There’s more than two decades of research to back U=U up. Read more about it here.
- Van Zyl says some doctors discourage HIV-positive women from giving birth naturally or breastfeeding. “In that situation, it really is up to the pregnant mother to put her foot down and say that she would like to breastfeed and you’d like to have a vaginal delivery. The one thing about the private sector is that if a patient pushes enough and puts their foot down, the doctor eventually gives in because you don’t want a bad reputation. You don’t want to be the gynaecologist that forces patients to have c-sections. So I always equip my pregnant moms with information.”
- Van Zyl appeals to healthcare professionals to work with their patients. “Don’t deny moms the opportunity to breastfeed because for some mommies, it really is a big deal. So please, just only take the context of the mom’s life and work [into consideration] because it’s teamwork. It’s not you telling her what to do. It’s a team, it’s you and her. And we’re working together to make sure that her baby stays HIV-negative.”
Download the Avert fact sheet here.
Download the UNaids report on HIV and stigma here.
Download the University of Cape Town presentation.