Two HIV positive women find ways to overcome barriers and move on with their lives, writes Meera Murugesan
DRESSED in a simple jubah (long gown) and tudung (headscarf), Farina Ahmad looks like an average mum doing the Friday afternoon school run.
The 41-year-old housewife from Rawang has a calm, composed demeanour as she deals with her active, 10-year-old boy.
Few would realise the turmoil this woman has gone through in life.
Farina is HIV positive and so is her husband. They were both diagnosed in 2008.
For most of us, HIV/AIDS is not something we deal with on a daily basis and certainly not an issue we expect to intrude into our lives.
We read about the statistics and hear the public service announcements on radio and television but can never fully appreciate the realities of living with the condition.
As of last year, there were 99,338 HIV positive men and 12,578 HIV positive women in Malaysia.
For women like Farina, being part of this number means accepting a difficult reality and coping with both the burden of the condition and the stigma associated with it.
At the time of her diagnosis, Farina’s son was slightly more than a year old. She also had two older daughters from a previous marriage who were living with them.
Her husband, a taxi driver, fell ill with persistent fever and was admitted to the hospital for two weeks.
They didn’t know what was ailing him but tests eventually revealed that he was HIV positive.
A stunned Farina was advised to get tested as well and to immediately stop breastfeeding her toddler son as there was a risk of transmission to the child if she too was HIV positive.
Tests eventually confirmed that she too had the virus but her son was spared.
It was a traumatic and confusing time for the soft-spoken woman who had led a sheltered life as a housewife.
She didn’t even know much about HIV/AIDS and to be told that both she and her husband had the virus was a lot to handle.
“I cried every day until the screening test showed my child was HIV free. I was so relieved that at least he had been spared but even then I made the doctor test him twice just to be sure.”
The year that followed was an extremely difficult time for the family as they grappled with her husband’s ill health and loss of income.
They moved from place to place as they couldn’t afford to pay rent and their car was also repossessed.
They were afraid to share news of their HIV status with anyone, even immediate family members, for fear of rejection.
Until today, neither Farina’s parents nor any of her siblings know about her condition.
She fears being isolated and judged by those she loves and has chosen to keep her secret.
Her relationship with her husband has remained strong though despite the challenges they have faced.
According to Farina, in the beginning her husband was wrecked with guilt at having infected her although she never blamed him for her condition.
He himself had no idea he was HIV positive prior to their marriage and he became depressed over their situation.
After the diagnosis, her husband’s ex-wife contacted them to say she too was HIV positive.
Farina says it has made her realise the importance of blood screening for couples who want to marry. At least it leaves them informed and prepared to face the future.
“In our case, we decided there was no point in blaming each other or anyone else. We had to find a way to move forward, stay positive and build our lives again. We couldn’t allow the disease to control us.”
The couple resolved to stay together and provide the best for their child.
Today, her husband works as a company driver and the family has regained some stability. Farina’s two older children from her previous marriage are already working too.
The couple receives HIV medication for free from public hospitals and Farina only has praise for the doctors and nurses she meets during check-ups.
She says they show sensitivity and concern for her and her family.
Her son is aware that both his parents have a medical condition because he sees them taking medication daily but he’s too young to fully comprehend the complexities of the condition.
Farina says they talk to him about it because they would rather he hear it from them and be prepared to accept the situation than be shocked by it one day.
“We are just like any other parents. We want our child to be happy and to be accepted for who he is. We didn’t ask for this but it has happened. We just want to watch our son grow and to be there for him.”
PICKING UP THE PIECES
For Rashidah Husin, another HIV positive mum, life has taken a turn for the worse after her diagnosis.
The 44-year-old mother of two boys, aged nine and six, not only has to grapple with the challenges of being a single parent but also in dealing with her older son who is also HIV positive.
She came to know about her status when she was tested while pregnant with her younger son.
Once tests confirmed she was HIV positive, she was immediately put on antiretroviral drugs to prevent transmission to her unborn child. Her now six-year-old son was born free of the virus.
Her husband and older son were also tested. Unfortunately, both were diagnosed as HIV positive.
“My marriage broke down after that. It was already a problematic relationship to begin with and the diagnosis made it worse. We blamed each other. Things just went downhill after that and we separated.”
Today, she lives in a low-cost flat and works two jobs just to earn RM600 a month so she can support her boys. Being poor and HIV positive is a double blow for the family.
Her husband provides no support and the family has not heard from him since he left home in 2014.
“I have to take medication daily and also make sure my son does the same. He’s just a child. Every day I think about what I could have done differently to prevent him from being like me. It’s heartbreaking as a mum to know I passed this to him.”
Her son is a smart, active boy who’s always top of his class. Rashidah says he’s still unaware of his condition. Doctors have advised her to explain it to him as he grows older.
She adds that her children remain her priority no matter how challenging and stressful life gets.
She admits there are days when she feels like giving up because putting food on the table and struggling to make ends meet is so overwhelming but she perseveres for the sake of her sons.
She works in a restaurant in the morning and does house cleaning in the later part of the day to bring home additional income.
Like Hafizah, she receives life-saving HIV medication for free but her life is a routine of hospital visits, work and chores at home. She has no family support and often relies on kind-hearted neighbours or friends to help her out when things get tough.
There are days when she’s too tired to do anything and days when feelings of fear and anxiety are overwhelming.
Her two boys are very protective of their mum and are her source of comfort when things seem bleak.
Rashidah says it pains her that they sometimes go hungry because there’s not enough food in the house.
“I know there’s only so much I can do but I keep trying because like any mother, I want the best for my children.”
* Names have been changed to protect the privacy of the individuals interviewed.
A Helping Hand
GLAXOSMITHKLINE Pharmaceutical Sdn Bhd (GSK Malaysia) has earmarked RM1.25 million for the Malaysian AIDS Foundation (MAF) to advance three of its high-impact AIDS programmes over the next three years.
Among these is MAF’s Paediatric AIDS Fund, which provides monthly allowances of RM100 to 100 underprivileged children living with HIV or born into HIV-impacted families with a combined household income of less than RM2000.
These allowances help affected families to purchase necessities like food, household items and HIV care.
The funds will be disbursed via a cashless distribution system provided by MyKasih Foundation, the community partner of MAF’s Paediatric AIDS Fund.
From the first reported case in 1986 up to 2016, a total of 111, 916 HIV infections have been recorded in Malaysia, 1,131 of whom were children under 13 years.
Professor Datuk Dr Adeeba Kamarulzaman, chairman of MAF, says that despite the many remarkable successes of the national AIDS response — most notably, the 40 per cent reduction in new HIV infections over the past decade — people living with HIV continue to face barriers in their day-to-day lives due to stigma and discrimination, causing many to live in constant fear and suffer in silence.