The price of ignorance

You can live with HIV for years but die every day from discrimination.
THERE was a guy in my university who was usually spotted alone and the rumour circulating about him was that he was HIV-positive. No one knew for sure but some students questioned why he was so skinny. Sadly, he was shunned by many.
The truth is that AIDS does not discriminate. There is no physical stereotype that applies. In fact, of the 33 million people living with AIDS in the world, 2.1 million of them are children.
You can’t even rely on symptoms to know whether or not you are infected because many people who have the virus don’t have any symptoms at all for many years.
Just recently, I was moved by a personal story I read on Marina Mahathir’s blog. She wrote about a friend who recently died but never stopped advocating better treatment of people living with HIV.
Her friend stood up in front of her father Tun Dr Mahathir Mohamad years ago at a presentation on the plight of Malaysians living with HIV saying: “I’m a teacher and I’m HIV-positive.”
Marina remembers how her father’s eyebrows shot up in surprise at the sight of a perfectly normal-looking young woman standing in front of him disclosing her status.
Dr Mahathir, who was PM at the time, later mentioned in one of his speeches how saddened he was to hear that some doctors turned away patients with HIV. Many of them still suffer in silence.
I was particularly disturbed when I heard about a family who tried to cleanse the body of their son, who had died of AIDS, with Clorox hoping to rid him of the virus. If they were fully aware of how HIV was transmitted, I’m sure they wouldn’t have resorted to such measures.
It is important we get our facts straight so that we don’t live with unnecessary panic or fear due to incorrect information. As Dame Elizabeth Taylor said: “It is bad enough people are dying of AIDS, but no one should die of ignorance.”
You won’t contract the virus from hugging, coughing, sneezing or swimming in the same pool as someone with HIV. There are no cases of HIV even being transmitted from sweat, tears or saliva.
Their mere presence will not harm you but every time you engage in unprotected sex, no matter how healthy the person looks, you’re putting yourself at risk.
Last week, I was meandering through the narrow back lanes of Chow Kit, Kuala Lumpur with my trusty GPS, a handycam in tow and my notepad leading me to the doorstep of the PT foundation, which has been around since 1987.
PT Foundation (formerly known as Pink Triangle Sdn Bhd) is the largest community-based organisation providing information, education and care services relating to HIV/AIDS in Malaysia.
I wanted to speak to people living with HIV to find out about the challenges they face on a daily basis.
I met people of all ages when I was there, even a small child who had the face of an angel. She reached out to me with her hands outstretched as if she was waiting for her hug. Instinctively, I picked her up and swung her around while she giggled, caught up in the moment.
Toddlers have no sense of time and she seemed like any other playful child in the universe but she wasn’t. Her future was uncertain yet.
Looking into her mischievous eyes; it was hard to imagine she was even sick. When I put her back down, she wandered off in search of her next adventure not realising what a profound impact she had had on me.
My mind started to think of all the what-ifs.
Could she have been saved if she didn’t receive her mother’s breast milk? Then I asked myself: When will she be old enough to be told she’s living with HIV? How is that going to affect her schooling, her self-esteem, her relationships or getting a job one day?
It was difficult for me to hear how some families turned their backs on members when they found out they had HIV. Some of them were forced out of their homes.
A man sitting quietly in the corner told me he came to the PT Foundation regularly to take a shower and grab a meal because he was no longer welcome in his home.
I was also told of a 22-year-old guy who applied for the job he always wanted and got it. At the time, he didn’t know he was HIV-positive.
A strange twist of fate occurred on an afternoon he would never forget. He decided to donate his blood at a blood donation drive where he later found out his blood could not be used because he was HIV-positive. He was in total shock. He spiraled into a depression. He didn’t know what to do.
In panic, he turned down his dream job out of fear that he would be discovered if the company sent him for the standard medical check-up. He also never told his parents about his condition because he feared he would be disowned.
He showed up on the doorstep of the PT Foundation one night and the staff were worried he might have lost his will to live but at least he was in a place where he felt safe from discrimination.
It took several months of counseling before he came to terms with the reality of his situation.
It must be simply horrible to be living with this virus and feel so completely alone. In the last 20 years, the number of new HIV cases in Malaysia has increased by 883%.
We cannot ignore this situation because it’s happening in our backyard. What’s alarming according to the World Health Organisation is that 30% of all new HIV cases in Malaysia are women, mostly married, who contracted the infection from their husbands.
How can we turn our backs on these people?
This is something that could happen to anyone. They should not need to suffer in silence or suffer alone. It is difficult for anyone to live with the virus. Must we break their spirits as well?
Every life deserves to be treated with dignity and respect. We may never know what it’s like to walk in someone else’s shoes but we can try to make room for some compassion and acceptance in our hearts for those suffering with HIV.
Jojo Struys is a TV Host/producer and more of her thoughts can heard on jojostruys.com. Videos of Jojo at the PT foundation and speaking to those living with HIV can be found on staronline.

The price of ignorance