Student, 20, with HIV afraid to tell his parents
Younger people with HIV face a unique set of problems, from the stigma of having the disease to not having the emotional maturity to deal with it. TNP speaks to a 20-year-old who is living with the virus
As a student in a tertiary institute, Brandon (not his real name) is used to taking tests.
But this was one examination that the 20-year-old had hoped to get a negative result on - a test for HIV.
Just after his 19th birthday, Brandon came down with a month-long fever.
Speaking to The New Paper on the condition of anonymity, Brandon said that back then, he told his parents and friends that it was dengue fever.
Deep down however, he suspected it was something more serious.
"I figured that it's my problem so I have to deal with it myself, that's why I went for the test alone. I didn't want to rely on others," said Brandon, who went to the Action for Aids (AFA) clinic in Kelantan Lane to get tested.
When the results were ready, an AFA volunteer took him to a "large, empty room" and broke the news to him.
"I was silent for a few minutes. I tried to act tough and started listing out all the changes I would need to make (to my life)," said Brandon.
"But the more I talked, the more I broke down. In the end, I sat there crying for 10 minutes."
He was told to take a confirmation test and that he would have to wait two weeks for the results.
Brandon said: "(During those two weeks). it was like waking up with a hangover every day. Even when I lay in bed at night, I would be filled with dread and would spend a few hours thinking about it."
After "the worst" two weeks of his life, the news he had been dreading came in the form of a phone call while he was attending a lecture in school.
"I had to go outside to take it. It was the AFA head nurse who apologised and said that the results were positive. I was too emotionally drained then and at that point, I couldn't have felt any sadder than I already was."
With a wry smile, he added that after the call, he returned to the lecture because he did not want to neglect his schoolwork.
Before becoming an HIV patient, Brandon admitted he had many misconceptions about the virus.
"I thought I wouldn't be able to share cutlery or food - not that I normally share my food - but once I got HIV, I had to learn that those were just myths. I was schooled by the virus," he said.
BURDEN
It has been a year since his diagnosis, but Brandon's parents still do not know about his condition. It is a burden keeping the secret, but he fears their reaction.
He said: "I don't want them to say, 'I told you so'. I've heard of stories where people get chased out of their homes after telling their family that they have HIV."
Only four of his closest classmates know about his condition.
One of them, who spoke on the condition of anonymity to protect Brandon's identity, told TNP: "I was very shocked... and I was worried.
"But I know that HIV isn't contagious through daily contact. He's still my good friend and the same person I know."
Brandon's subsidised medication costs about $60 a month, which he pays for with his $100 weekly allowance.
"I set the money aside once I get my pocket money. Even on months when it's tight, I just have to find the money for the medication," said Brandon, who takes four pills a day
Brandon's doctor also told him that while the viral load is now undetectable in his bloodstream, he will have to continue taking medication for life.
"I do blame the person who gave me this virus, but mostly I blame myself. Everyone says that I don't deserve it, but I did play with fire," said Brandon, adding that he had unprotected sex with several partners but did not keep track of them.
Infectious diseases specialist Leong Hoe Nam said younger HIV patients often face a tougher time.
Dr Leong said: "Younger people might not have the maturity to cope with and overcome the treatment.
"For those who can't tell their parents, they're trapped financially and emotionally. They can't tell their friends about it and they don't want to tell their parents about it."One thing weighing on Brandon's mind is national service next year, when he will have to declare his condition.
He said: "I've heard that I can be exempted from NS or take a desk-bound job, but I'm not sure what I'm leaning towards."
Although Brandon is not ready to "come out" publicly about his condition because he does not want to be labelled as the boy with HIV, he hopes his story will serve as an encouragement to others.
"Keeping it to yourself for almost a year isn't fun.
"I want (other HIV positive) people like me to hear my story and know that they are not alone," said Brandon.
I don't want them to say, 'I told you so'. I've heard of stories where people get chased out of their homes after telling their family that they have HIV.
- Brandon, on why he hasn't told his parents
AFA: Patients below 30 on the rise
Most young girls dream about having their first boyfriend.
And Kathy (not her real name) is no different.
But the 12-year-old, who was born with HIV, fears that her condition will get in the way of any romance in the future.
"I want to have a crush and have a kid without thinking about (my condition). But I'm really scared to have a boyfriend because I know that I can give other people HIV," she said.
Kathy was adopted when she was two or three years old, but she does not remember how her adoptive mother told her that she was HIV positive.
Her story is one of the case studies about young people living with HIV that is featured by Paint The Town Red (PTTR), a campaign that aims to tackle misinformation and the stigma of HIV. (See report, right.)
Kathy's story was collected through anonymous questionnaires administered by PTTR with the help of non-governmental organisation Action for Aids (AFA).
AFA general manager Sumita Banerjee said they are seeing more people below the age of 30 years testing positive for HIV.
Last year, 46 per cent of those who tested positive at AFA were below the age of 30, an increase from 33 per cent in 2014.
Health Ministry statistics show that in 2014, there were a total 456 new cases of HIV reported among Singapore residents.
Of that number, 91 were cases of patients below the age of 30 living with HIV. Of these, seven were aged 15 to 19, and 84 were aged 20 to 29.
Ms Banerjee said: "(The number of HIV positive patients below 30 makes up) almost 20 per cent, which is quite high, and it includes only those who are getting tested.
"Globally and particularly in Asia, one of the worrying trends is the growing infection rates among young people. HIV prevention and control programmes should take this into account."
She added that apart from the stigma of having the disease, younger people face challenges with medical expenses, lifelong treatment and reproductive options.
"Young people entering the workforce might have misconceptions about their employment options. These are just some of the challenges in addition to the emotional aspect," she said.
Dr Leong Hoe Nam, an infectious diseases specialist, said the number of teenage patients testing positive for HIV at his clinic has increased over the past few years.
It used to be one or two cases every four years, but he now sees the same number in just a year.
"Every HIV patient is one too many for me," said Dr Leong.
LACK OF MATURITY
He said that young HIV patients might not have the maturity to grasp the concept of being diagnosed or coping with the virus and it can be an "emotional disaster".
He added that teenagers might not also have the means to pay for their HIV medication.
In the questionnaire, Kathy said: "I want to be married though. I want three kids... But how can I do all of that when I have HIV?"
She added that she has heard comments about how "people like (her) shouldn't even be on this earth" and she said she feels hurt and angry because she isn't "like all the other girls".
Child psychiatrist Brian Yeo said that a child's reaction to being diagnosed with HIV is largely based on external factors.
Dr Yeo said: "If the community is understanding, there might be few external consequences besides medication.
"But if people around, like teachers or parents of other children, are less tolerant, then it might affect the child. It could cause them to have self esteem issues as well as difficulty socialising."
HIV awareness campaign targets youth
Early last year, a friend told Mr Scott Lai, 25, that he was HIV positive.
"His immediate question was to ask if I would still be friends with him," said Mr Lai. "Seeing him go through the experience and not knowing how to handle his condition, (it) made me think about helping others like him."
His friend's experience was part of the inspiration behind Paint the Town Red (PTTR).
PTTR is a campaign organised by Mr Lai and three other students from Nanyang Technological University's Wee Kim Wee School of Communication and Information.
The campaign targets youth aged 18 to 28 and aims to tackle the lack of information and misinformation about HIV testing, prevention and treatment.
Mr Lai said: "I realised that people didn't know how susceptible they were (to HIV) because there was still a lack of information.
"(The campaign) was also something meaningful to me after seeing my friend in that situation."
Besides producing an interactive website to educate people about the virus, the group made a video in which celebrities such as actor Nat Ho and musician Benjamin Kheng read out true stories about people living with HIV.
PLEDGE
One of the campaign's aims is to encourage people to make a pledge to support those living with the virus.
Group member Kimberly Teh, 22, said the team also wanted to create a discussion about HIV and the people living with it.
She said: "We believe the open discourse will help to change mindsets.
"While some comments we got online were discouraging and critical, we still believe that putting this taboo subject in the spotlight will generate some sort of meaningful discussion."
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