Sunday November 29, 2009
Living with HIV
Stories by AUDREY EDWARDS
A woman reveals how she copes with HIV.
IT took Norlela Mokhtar a harrowing few months back in 2000 to take the step that would change her life forever. About a year into her second marriage back in 1997, she decided to divorce her husband, her “first love”, who was an injecting drug user, after he refused to kick his habit.
Norlela, in the meantime, was trying to move on with life with her four children from a previous marriage.
“My stepmother was constantly urging me to get a HIV test. But I didn’t want to because the doctor that she recommended was my cousin,” she says. “I was embarrassed.”
Finally, after urging from friends, including one who she chatted with on the Internet and who worked with the Malaysian AIDS Council (MAC), Norlela finally decided to get tested at the then Universiti Hospital (now known as Universiti Malaya Medical Centre).
Adequate support is crucial in the care and treatment of people living with HIV. “My friend from MAC told me that I was at risk because of my husband, and I needed to get tested,” she recalls.
The initial test results came back positive and a subsequent one showed that she had a CD4 count of more than 600.
“I felt fine. There were no signs at all,” she says.
Because she did not need treatment at the time, Norlela continued with life as usual and had herself tested every so often.
Her CD4 count, however hit about 280 six years ago and she was advised to go on treatment.
“But I didn’t do so because I didn’t have enough money. And it was difficult because I had to look after my children on a salary that didn’t even reach RM1,000,” she says.
“I also was afraid to see the doctor because I thought he would ‘scold’ me.”
This led to Norlela’s condition slowly deteriorating until she landed in hospital with tuberculosis in 2005. “I spent two weeks in there and the CD4 count was only about 100,” she says, adding that she finally went on treatment. She reveals that her CD4 count is currently about 380, while the viral load is undetectable.
The feisty 45-year-old now works with the Malaysian Positive Network, which provides care and support for people living with HIV (PLHIV).
She is also a MAC treatment, care, and support executive.
Norlela Mokhtar...I felt fine. There were no signs at all. Norlela has also gone on to marry again while her kids continue to do well at work and school, and they accept her status.
“Like some of my friends, I got to know about my status earlier on. This is unlike others who only find out after they fall sick and land in hospital,” she says.
“If you know your status early, then you can start taking care of yourself. You can even go without medication for about eight to 10 years. You should go for the test because once you know, then you can start focusing on what to do with your life.”
Looking back, Norlela wishes she had more support and counselling after going for the HIV test despite being referred to an infectious disease specialist and counsellor.
“Back then, there wasn’t much of counselling and things like that. I remember seeing the counsellor who asked me to draw how I felt. So, I drew a picture of myself crying. And that was it,” she says.
“And although there was a referral, it was really up to you whether you wanted to go for it. I really didn’t know much about the disease until I fell sick and was admitted.”
What is done after a positive test, Norlela insists, is important because it helps a person not fall into depression or be in denial. She recalls some PLHIV who just withered away because there was no one there for them.
“It is important for someone to be there for them because if there is no one, then they have no support. I was lucky. I had friends. And just maybe, Allah decided to give me another chance at life.”
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