Simiso Msomi was 21 when he tested positive for HIV. Now at age 30, he has a renewed sense of purpose and hope and wants to use his life journey to redress all stereotypes that plague people living with HIV.
By: Thanduxolo “Thandz” Buti
Simiso is one of the few brave black South African young people who are outspoken about living with HIV (Human Immunodeficiency Virus). The KwaZulu-Natal-born young man is a shining beacon of light for many young black people struggling to come to grips with living with HIV and those affected by the virus.
“I believe that living with HIV should be normalised, especially with the high number of young people living with the virus in our society,” he tells Blacklight. “By now, as a society, we should be more accepting that this is a reality for a lot of South Africans. And the best way for us to deal with this issue is to normalise and de-stigmatise it.”
While the virus may no longer be a death sentence, it is still largely stigmatised, resulting in many concealing their status from loved ones as well as suffering with depression.
Many still opt not to test because of the fear of having to face life living HIV. There are also the many myths around the disease that are still alive in our societies which result in many believing that they are immune to the virus because of age, social standing, race etc.
“I think many people are afraid to talk about the virus or to test because it is [HIV] still associated with death – an undignified death,” says Simiso.
“There was a time, during Thabo Mbeki’s administration, where a lot of people died painfully. During that time, we watched friends and family members die so painfully. A lot of the 80s and 90s babies witnessed and experienced all of this death, so the fear is still there.
“We have to get to a place where we remove that fear and start looking at the solutions, and luckily we have so many solutions now.”
Recent statistics (2018) show that there are an estimated 7.7 million South Africans living with HIV. According to the stats, 90% of people living with the virus were aware of their status, 87% virally suppressed (54% of all people living with HIV).
The stats also reflected a 20.4% prevalence (ages 15 – 49), 240 00 new infections, 71 000 AIDS-related deaths, 62% of adults on ARVs and 63% of children on treatment.
According to the study, the implementation of the Antiretroviral (ART) programme by the government has also seen an increase in life expectancy from 56 in 2010 to 63 years in 2018.
Read more about HIV/AIDS here: Avert.org
Simiso has been labelled a brave young man because he did not just disclose his status to his family, friends and community; he is also vocal on social media about his journey with HIV. He says he chose to go public about his status to help eradicate the discrimination and stigmatisation of people living with the virus.
“When I discovered that I was HIV positive, I had to deal with the shame, discrimination and stigmatisation. I felt like my life was over. I was in a bad space, until I met a guy who is an HIV activist and had been living with the virus for over 20 years. He was successful – driving a Mercedes and had a beautiful wife – that changed my perspective,” he explains.
“I realised that the best way to change the perceptions around the virus was to speak out and to show other people that there is life after testing positive. Right now, we have the solutions. If everyone in South Africa went and got tested, started using the medication or the prevention methods, there would be no spreading of the virus.
“Our biggest enemy is the stigmatisation of the virus in our societies. I want the stigma to end because I have kids and I don’t want my kids and their kids to grow up in a society where sex and intimacy are made to be a bad a thing.”
Simiso is a father to two daughters and works as an electrician. While he may appear to be living his best life, there was a time when he believed that there was no life after he tested positive.
He says sharing his story gave him strength and also helped instil a sense of hope in others living and affected by the virus.
“I can see the people around me that their perception has changed, and that means that they can also change another person’s perception. They can use me as a reference, a living reference, to show that there is life after testing positive.
“People have to know that as difficult as it may be in the beginning, eventually it does become okay. You can still live your life to the fullest and pursue your dreams and goals.
“The information I have gathered through my journey can help another person, they do not have to go through the three or four years of pain and despair that I went through. If I can make the acceptance phase quicker, then I have gained something,” he says.
Simiso says before he tested positive, he believed the virus was only something that affected the older generation. His girlfriend at the time tested regularly and was negative. So when he went to the clinic due to chest pains, he thought nothing when the nurse suggested that he do an HIV test on top of the TB test.
“I had never tested before and I had no reason to worry about my status, so I obliged,” he recalls. “When the test came back positive I was in total disbelief – I was angry and confused. I was very much in-denial because I did not think that would be me. I kept thinking to myself, ‘I’m too young for this to happen. Why is this happening to me?’”
Simiso slipped into a dark phase and confided in his girlfriend, sister, best friend and parents who were all supportive.
“I disclosed because it was a heavy load for me to carry on my own.” He says. “I could not carry that burden on my own. Your mind starts running wild because you fear the worst. I thought I would not have kids, have a partner, marry, and all the things that many people dream of.
“The funny thing is that the stigma that comes from society is also within you. So you judge yourself as well because of your perceptions around the virus. You know what everybody is saying about the virus, so you say those things to yourself as well.
He continues: “Coming out made things better for me, but I know that it’s not always the same with everyone. But when I was hiding it, it was eating me up inside. So the more I spoke about it, the more it made other people also want to be part of the journey with me. It made me feel like I still belonged.”
Accepting the status
After testing positive many experience severe depression due to fear of stigmatisation and discrimination. Simiso says he feared that he was going to die and gave himself about “three to four years” to live. Everytime, he would fall ill, he would automatically think it was HIV/AIDS symptoms.
“I used to get worried about everything (flu, stomach bug, rash, chest pains etc.) until I spoke to an HIV activist, and he was like, “At the end of the day you are human, so you will still have flu and other sicknesses. Even HIV negative people also get sick.
“It’s harder when you don’t have anyone to talk to. That is why some newly diagnosed people always go to the clinic even for the smallest things, because of fear. But (most times) the nurse is not HIV positive; hence we need people who are positive and healthy to be more visible because that can help ease the fear and paranoia. When you are newly diagnosed it’s painful, but it gets easier.”
Simiso says he started ARVs a year or two after testing positive. “For a while I was running away from them [ARVs] because once you start it’s a lifetime commitment. Also, that commitment requires you to accept your status.
“I could not run anymore because I was losing weight and I did not like my overall appearance. After I started taking treatment I began seeing changes in my body, and that gave me hope. I then joined the gym and I started liking my body. I regained my self-confidence. Once I regained my self-confidence, I felt like I had been given another chance at life. But it all started with acceptance.”
Dating while living with HIV
Dating while living with HIV can prove to be a challenge, especially as a young person. Because of the stigma, most people living with the virus face rejection after they disclose their status; Simiso says this was one of the reasons that made him to be more transparent about his status.
“Some people choose to wait and disclose later in the relationship, but that’s also dangerous because you can get negative backlash. Some people choose not to disclose at all because of the rejection – it’s tough.”
While Simiso’s partner was accepting and supportive of his status at first, after confiding in her friends, she opted to end their relationship.
“That shattered me because I felt like she wanted to continue with the relationship but broke it off because of external pressures,” he says.
“After that, I struggled to date and that’s when I decided to come out so that people know from the get-go what they are getting into. Disclosing was a way of freeing myself. Also, now there are many preventive measures so you can also date someone negative – there are things like Prep.”
The young man reveals that since turning 30 he is more grateful for life more than ever before. “When I was diagnosed I thought I would never be able to have my kids but now I am a father to two daughters who are both negative.
“I am grateful that I am growing old and I can see myself growing older because for a while I never thought I would make it to 30, but here I am.
“Now I feel like I got a grip on this life thing. I have quite a positive outlook of life. I see myself living in my dream house, I see myself driving that car – there are no limits. Before I did not think I would amount to much. I was even looking down on myself.”
He adds that his journey has taught him a lot of lessons, but most importantly, it’s taught him to love himself more.
“If you don’t see value in yourself, if you don’t hold yourself in high regard, if you don’t love yourself, no else will.
“People tend to reciprocate your energy – you get back what you put out.
He urges the youth to educate themselves more about sexual health, as no one is exempt from contracting HIV and other sexually transmitted diseases.
“We have the internet. We have smartphones. Use them to inform yourself about sexual health. Get the facts, understand the risks, and understand the preventive measures before you engage in sex.
“Talk to the elders (whether it’s a family member, family friend, a responsible community member or a teacher).
“Equip yourself with yourself with the right tools before you engage in any sexual activities.”
AIDS Helpline 24-hour hotline (information on HIV testing, treatment, care and prevention): 0800 012 322