'Saving a life is better than doing nothing' says HIV sufferer

Support groups for those who are HIV positive are essential.
Support groups for those who are HIV positive are essential.

After making the devastating discovery that the illness that almost cost her her life was HIV, a young woman has taken to social media in an effort to help other young people.

Now Sinethemba Lukhele, age 23, is calling on all South Africans to work together to help each other and save the lives of those living with HIV, but don’t have the support they need in life.

Emotional struggle

When Lukhele was diagnosed with HIV she almost lost her life because she didn’t have the support she needed. She didn’t know how to cope with the diagnosis and learn to deal with the changes that come with the HI virus. And so, in an effort to comfort herself, she turned to reading and writing.

“Before I accepted my HIV status, I thought life would be simple as the nurses said. But I soon realised that dealing with the changes and responsibilities that comes with being HIV positive was too much and I was not prepared for it. I made the right choice by taking an HIV test when I was not sick, but after my diagnosis I lost much weight because I didn’t know how to accept it and I was struggling emotionally. I always felt as if people knew that I was HIV positive,” Lukhele said.

She met other young people like herself and befriended them on Facebook. A while later she saw some of her new friends defaulting on their treatment because they did not know how to deal with the changes and side effects of ART.

One night she publicly posted an appeal.

“It’s time to take our ARV’s,” she wrote as her status. The bold move triggered and amazing response, with many people reacting positively.

“But I knew some people living with HIV were not ready to disclose their status, so I then came up with an idea to create a private Facebook page where people can feel free to ask questions, talk to others and get the support they need to stay focused and healthy,” she said.

Young people dying in denial

On the Facebook page, those who join use the platform to encourage each other, talk about their viral load, how they adhere to their ARV treatment, practice safe sex and eat healthily.

Lukhele now plans to use her secret page to reach as many young HIV positive people as she can – particularly teenagers.

“And and the end of the day, if I am able to encourage and save one life, it is better than not doing anything. Young people are dying in denial because they feel no one understands what they are going through by being diagnosed with HIV,” Lukhele said.

But there are challenges too. She has seen some rural families that still believe in traditional medicine mixing their ARVs with traditional medicines in the hope that it will work faster.

“Also they stop taking ARV’s when their CD4 test says undetectable, they engage in unprotected sex and substance abuse and they don’t inform themselves about HIV,” she said.

According to Bheki Khumalo, a lay counsellor from Iswepe clinic, “This is such a great initiative from Lukhele. As long as she will always respect people’s confidentiality. It is important to all people to know their HIV status so they can get treatment as soon as possible. The HIV can destroy so many CD4 cells that the body can’t fight infection and diseases anymore. When that happens, HIV infection can lead to Aids.”

Benefits of a support group

He explained that the benefits of testing for HIV far outweighed the potential consequences.

“People who know they have HIV can take complete control of their lives. Early treatment ensures better health and by knowing your status you can prevent being infected in new ways,” Khumalo said.

Nokuthula Mashego from the TAC branch in Daantjie TAC said attending a support group after being diagnosed with HIV is important. Group members can get support from other people living with HIV, who are in a similar situation and they can also learn about the HI virus and the drugs infected people need to take. The other benefits of joining a support group is that other people with the virus can help you accept your HIV status.

“Knowing your viral load is important because you need to monitor the amount of HIV in your body and know if the medication is still working. Adherence is taking your drugs exactly as prescribed at the right time and the right dose,” said Mashego.

“In many cases people living with HIV who are on ARV’s tend to default when they hear the words ‘undetectable viral load’. This is because they are misinformed and assume they are cured from HIV. Having an undetectable viral load is important for a number of reasons, first of all because your immune system is able to recover and become stronger and it means that you have a very low risk of becoming ill because of HIV. It also reduces your risk of developing some other serious illnesses as well,” said Khumalo.

Lukhele said she found the support she needed by attending the TAC and finding out where to start and how to continue. Now she is dedicated to supporting others and helping them find their way. 

Image credit: iStock

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