PETALING JAYA, Dec 1 — It has been nearly a decade since Ros (not her real name) discovered that she was HIV positive, but her emotions are still raw and come rushing back every time she thinks about it.
The 31-year-old, who lives in Kuching, Sarawak, has been living with HIV since 2012, after contracting the disease from her first husband.
“It was a bombshell. I didn’t know anything about HIV/AIDS. I was completely taken aback.
“How did we get it? Where did it come from? There were so many questions in my mind, but I didn’t have any answers,” said a teary Ros in an interview with Malay Mail.
She added that her husband was in and out of the hospital for months, often suffering from chills, headaches and a bad cough, before a blood test revealed that he was HIV positive.
Sadly, his condition was at an advanced stage by that point and he passed away about six months later.
Ros’s husband was a drug user and would share needles with others — which is a common mode of transmission of HIV.
A typical misconception about HIV is that it can be transmitted through touch or saliva, but in actual fact, it can only be transmitted through vaginal fluid, anal fluid, semen, breastmilk and blood.
“I was only a housewife then and we had a son together too. It was a very dark time in my life, but I’m lucky and thankful that my son is negative even though I got the disease,” said Ros.
A few years later, Ros unexpectedly found love and remarried someone who accepted her as she was.
Two years later in 2017, Ros gave birth to her second child but her marriage fell apart just 15 days later as her husband left and later filed for divorce.
With two children to look after, Ros felt her world crashing down right in front of her eyes, but even with everything happening to her, she was still more afraid of how her family and sickly father would take the news.
“It was really hard. My family didn’t know about it and I was scared that they would reject me if they knew. When I finally told them, they had trouble accepting it at first but they’ve become very supportive now after learning more about the disease,” said Ros.
“But I still haven’t told my father. He has health complications and I just can’t bring myself to tell him such sad news and break his heart.”
Over the years, Ros has slowly adapted to living with HIV and has successfully stabilised her condition, through persistent and consistent treatment as the virus is now “undetectable.”
This means that she can live a normal life as there are only so few copies of the virus in her blood and she will not be able to transmit it to anyone else either.
While her physical health has improved, Ros has struggled to come to terms with the stigma or false conceptions that people have about HIV/AIDS.
That soon changed, however, after Ros came across the Teratak Kasih Tok Nan (TKTN) centre while receiving treatment at the I\infectious diseases clinic at the Sarawak General Hospital (SGH).
Its name is in honour of the late Sarawak chief minister Tan Sri Adenan Satem and his wife Datuk Jamilah Anu who is TKTN’s patron and is heavily invested in the centre where she helps with fundraising and making sure of its success.
The centre, also known as the One-Stop Support Centre, was established in 2017 as a safe space for people living with HIV (PLHIV) and their families, which also acts as a halfway home, accommodating up to 13 people, for those travelling long distances in the state to access HIV treatment at SGH.
It was founded by the Malaysian AIDS Foundation (MAF) and Malaysian AIDS Council, and is run by the Sarawak AIDS Concern Society (SACS).
TKTN coordinator Victoria Antai Belayong said that she believes Ros became emotionally stronger thanks to the support she’s had at the centre and from her family.
“Some PLHIV took a lot of time to open up, but Ros she is one of the best visitors we’ve had. She’s made a lot of friends here because our community is mostly made up of single mothers,” said Victoria.
She said that the TKTN centre provides life skills training and other social reintegration support to its beneficiaries, in addition to community-based HIV testing, counselling, treatment literacy and legal and welfare service referrals.
There are also monthly support meetings, as well as baking and cooking classes held for the mothers, and storytelling sessions for the kids.
Victoria, who's been at TKTN since its inception, added that the main point of running the centre — apart from providing accommodation to PLHIV receiving treatment — was to be there emotionally for their beneficiaries.
“Unfortunately, the stigma against HIV/AIDS here in Sarawak is really bad. Because of this, many PLHIV choose not to go for treatment or talk to people about the disease, so people won’t know that they have it,” said Victoria.
“But that’s why we’re here. We want them to know that there are people who care about them.
“We have a safe place if you need to talk, we have someone for you to talk to. We may not be able to help in terms of money, but we always try our best to give them all the support they need.”
Victoria added that more awareness has to be created about HIV/AIDS and that members of the public can also come down to the centre to learn more about the disease.
“PLHIV are normal, but unlucky people you could say. You can’t always blame them for having the disease, they are the real victims here.”
One of the ways that MAF has attempted to create more awareness about the disease is through the recently created Shopee X MAF Fund, which aims to raise funds to support treatment, care and prevention programmes for PLHIV.
The Shopee X MAF Fund will have a dedicated microsite on Shopee where people can shop for exclusive Red Ribbon merchandise including lapel pins, T-shirts, jerseys and tote bags created by leading Malaysian designers.
MAF’s long-time partners Hilton Hotel Group and MAC Cosmetics, are also supporting the cause by offering hotel stay vouchers to patrons and giving away free bullet lipsticks to donors of RM200 and above.
There will also be interactive live virtual discussions with Red Ribbon Celebrity Supporters on Shopee LIVE as they discuss the everyday plights faced by PLHIV.
* December 1 is World AIDS Day is commemorated to show support for people living with and affected by HIV. It is also to remember those who lost their lives to AIDS. This year’s theme is “Global solidarity, shared responsibility.”
