Being told you are HIV-positive is one of the most difficult experiences anyone could go through in life. One might feel scared, sad or even angry and all these emotions are a normal, and completely natural, part of coping with something that could change your life forever.
However, sharing personal stories about the Human Immunodeficiency Virus (HIV) might be a very powerful way to help others in a similar situation.
Yet the many misconceptions about what it means to be living with HIV—the lentivirus which, over time, causes the Acquired Immunodeficiency Syndrome (AIDS) of which no medical cure has been found yet—make dealing with the infection even more complex.
AIDS is a condition in humans in which progressive failure of the immune system allows life-threatening opportunistic infections to thrive. Yet ultimately, people are different—they would somehow cope with their HIV-diagnosis and how they move forward will be unique and determined by many factors.
Remember, HIV does not have to stop you living a long, happy and fulfilling life. With the right treatment and support, it is possible to live as long as the average person.
This is what 37-year-old ‘Mathato Kotseli of Majapereng in the outskirts of Mohale’s Hoek district told herself three years ago when she found out she was HIV-positive.
Kotseli says it took her one year before realising she was HIV-positive and starting taking antiretroviral (ARV) drugs.
“In 2015, after six years of life as a factory worker, I started discovering unusual symptoms of large pimples around my breasts and buttocks, I could not even think of HIV at the time; I just thought it was a normal disease,” Kotseli said.
“I did not take the pimples seriously and never bothered to see a doctor about them. My days at work were normal because the pimples would only be painful and itching during the night. I continued with that kind of life, knowing the pimples would show-up, heal and then show-up again after weeks or a month.
“I spent the entire 2015 with the same problem until I suspected it was arthritis, and of course, most of the people I spoke to about the issue made me believe I was right. I only became worried when I started losing weight. I did not find this normal but I knew I was not sick but would only have the pimples.”
Kotseli says having a real friend who cared for her was the reason she decided to test for HIV and how she eventually came to know her status. Motseki is now a domestic worker in Soweto, South Africa and met this reporter during her off-days in Majapereng.
“I waited to come home for the December holidays, and during the first month of 2016, I decided to go to Tšepo Clinic (based in the Mohale’s Hoek town), due to the influence of one of my friends.
“Normally, for most of people, if their friends encouraged them to go for HIV-testing, they would think such friends were suspecting them of prostitution. But surprisingly, I took the advice and acted immediately.”
But Kotseli says she was completely taken by surprise when her results came.
“I must say it was not easy for me to accept the results. I nearly went crazy because I kept asking myself multiple questions which I could not even answer. One of them was: Why me?” said Kotseli.
According to Kotseli, when she tested HIV-positive, she had become wasted but started gaining her bodyweight eight months after taking her first ARVs.
However, Kotseki says her situation was made more bearable by the support she constantly received from her mother as she was the only one of her parents supporting her as she struggled to cope with her situation.
“As for my mother-in-law, she could not accept me anymore, and since my husband had passed on, I decided to go back to my mother’s home because I could not bear to continue hearing more criticism and insults from her (mother-in law).
“She would always tell me of my worst behaviour and that I was a prostitute in South Africa. Those were very sad days of my life but I could not allow her to continue damaging me anymore. So I left her place and went to where I am currently staying with my supporting mother and my 15-year-old beautiful daughter,” she narrated.
Kotseki says she is always taking her medication and is still employed as a domestic worker. However, the 37-year-old says even though she thinks it is the right thing to do and be honest with her HIV-status, especially with people around her, she is still reluctant to tell her employer about her status for fear of losing her job.
Despite the fact that Mohale’s Hoek was one of the northern districts hit by severe drought this past agricultural season, Motseki’s family does not go to bed on an empty stomach because their daughter is employed.
She continued: “My mother also plants different vegetables for the family to survive. Even though we are buying maize meal, we are not struggling to survive.
“I know that I am not forced to reveal my status to my employer, but I think it would be fair for her to know because work is where I spend most of my time. But I am scared she might fire me the moment I tell her I am HIV-positive and how will my family survive if I am no longer employed?”
It is a fact that whether it is for one morning or seven days a week, many parents are reliant on a domestic worker in one capacity or another. More often than not, these women are responsible for cleaning our homes and preparing our food.
Previously, domestic workers were not protected by labour laws and exploitation was rife in their trade. But now they are entitled to a minimum wage and basic working conditions. They are also protected against HIV-related discrimination in the workplace.
However, some employers feel uncomfortable leaving their children with a nanny who neither knows nor would not reveal her HIV-status.
But the law also protects a nanny’s rights when it comes to being tested for HIV. The law states that employers must get permission from the Labour Court first before they could ask their minder to test for HIV.
And as for Kotseli, life is a constant challenge for her, especially when she is at work because she has to hide the ARVs from her employer. “Luckily, when the medication is finished, my mother usually gives it to someone who might be going to South Africa or brings it herself. There is nothing suspicious that would make my boss find out that I am using ARVs.”
Meanwhile, the MNN Centre for Investigative Journalism (Centre) has interviewed healthcare experts to find out if having an HIV-positive domestic worker or nanny should be cause for concern for employers. The Centre also asked if revealing such a status to the employer would be a good idea or grounds for instant dismissal.
‘Mamahlapane Mohapi from Point Main Health Centre explains: “Firing a person, whether a nanny or any employee because she or he is HIV-positive, is against labour laws and such a person could take legal action against such an employer.
“You cannot be dismissed just because you are HIV-positive; this is automatically called unfair dismissal. Being HIV-positive does not mean you cannot do your work.
“Fortunate enough, HIV is actually not an easy virus to contract. The virus is primarily contracted via sexual intercourse and can also be transmitted from mother-to-child through birth and breastfeeding. As long as your nanny is not breastfeeding your child, your baby is almost certainly 99.9% safe.
“Casual contacts such as shaking hands, kissing, sharing toilets, drinking fountains, eating together, going to school together or working together cannot transmit the virus,” she added.
“So there is no reason why employers should fear if their nanny is HIV-positive.
“No HIV-infections caused by saliva, tears, sweat, urine or faeces have ever been reported. Fears of the virus spreading from the nanny to the child via a cut or rash are very unrealistic. ‘Education is key; if your nannies know how to stop any bleeding straight away and cover any cuts with a plaster, there is minimal risk of infection,” she further said.
“Being HIV-positive should not be a barrier between the domestic worker and her employer. In fact, it can be an opportunity for the relationship with your domestic worker to grow in respect and trust.
“The best thing to do is to educate your nanny on HIV-treatment and transmission. Education takes away fearful assumptions about the disease, for both you and your nanny,” says Mohapi.
“When you know your nanny is HIV-positive, you can encourage her to take antiretroviral medication. This reduces the viral load to almost minimal in the blood and will also reduce the chances of transmission to other people.
“When your nanny is HIV-positive or not, the most important thing is to respect her rights, educate and support her about the disease and of course, make sure you agree on a course of action in all situations to protect both her health and the health of your children.”
Domestic work is one of the largest sectors employing women in South Africa and these women are vulnerable to HIV.
Many of the women are migrants, who are often uneducated and tend to live and work in isolation. The majority of cases dealing with the unfair dismissal of employees with HIV usually involves individual employers, and in most cases those who have people working in their homes.
Domestic workers are covered by the same laws that protect against HIV-discrimination in the workplace so they could seek recourse in case of unfair treatment.