"I was born with HIV, and I am tired of keeping secrets" by Nurafiqah, Singapore
I was born with the Human Immunodeficiency Virus (HIV) and my medical condition is
something that I kept to myself for most of my life.
Things changed in early 2020 when my story came out on the UequalsU_Sg Instagram page as a person living with HIV. I was the 5th person and the only woman to be open about my HIV status in Singapore.
I was tired of keeping secrets and being judged by people, so I decided to write in and share my story on UequalsU_Sg Instagram page. Since then, I have joined the platform’s founder Caitlin to run the Instagram account and kickstart a Facebook page.
As a person with an undetectable and untranslatable viral load, I want more people to know that HIV is not a death sentence and does not have to lead to AIDS. People living with HIV (PLHIV) must go through treatment by taking a certain type of medication which is similar to how people living with diabetes or high blood pressure is doing. If I am taking my medication, I can go about my everyday life just like everyone else.
I contracted HIV from my mother through perinatal transmission. Women who are living with HIV can have children if they are on effective treatment and an undetectable viral load to limit transmission to the baby. In my case, my mother didn’t know that she was living with HIV while she was pregnant with me.
I was diagnosed with HIV when I was 3 years old but was never told about my condition, I only found out about my diagnosis in 2008; when I found out about it, I was shocked. All I knew growing up was that I had to go for regular medical check-ups and ask prescribed medications daily, but I never knew what they were for. It was only when I had followed my parents to one of their medical appointments that I heard the doctor mention my parents’ HIV status. From there, I learned that, like my parents, I am also HIV-positive.
Growing up, there were instances when I felt frustrated and upset because others didn’t understand what it meant to live with HIV and how it isn’t contagious in everyday life.
In my family, we hardly ever discuss our feelings and there has always been an emphasis that I should not mention my medical condition to anyone else. I think they feared that I would face stigma and discrimination. There is the stigma that HIV is a sexually transmitted disease and for women especially, there’s the belief that to have had sex means you’re “dirty”. As a woman in the Malay/Muslim community, there is social pressure to not have premarital sex before marriage. When I mention my positive HIV status to people, they might jump to conclusion that I have been a promiscuous Malay woman before marriage, and this is unacceptable in my community and conservative society like Singapore.
Ever since I came out publicly as a person living with HIV, I have been getting nice comments from people who follow the UequalsU_Sg Instagram page. There was someone who approached Caitlin to want to talk to me for a magazines article and there are people who want to get to know my story, as a woman in the Malay/Muslim community. Most people think that HIV is always associated with gay men, so by sharing my story, I am changing the stereotype of HIV in Singapore.
I would say that Singaporeans are not well-informed about HIV and AIDS and the reason for me saying this is because I was previously advised by a lecturer to intern in school instead of at companies like my peers. He was afraid that because of my condition, I would “cause trouble” for him if I were to be hospitalized mid-way through the internship. When I shared my dream to pursue engineering at Singapore Polytechnic, he told me to aim for a less prestigious school and for a desk-bound job instead.
Apart from being “advised” by my lecturer about my career pathway, I was also being judged for having HIV. It happened during my admission into Singapore Polytechnic, I had to declare my HIV status to the school. After declaring my status in the application form, I was pulled aside to be interviewed by the senior officer-in-charge of admission. Once she saw my application form and saw that I declare that I have HIV, she gave me that look, you know like I’m someone who has casual sex. She asks me a bunch of questions like, how did I get HIV, and will my classmates get infected if I share my food with them? I felt that this was very insensitive, why does the school need to know about how I contracted HIV?
I wished the schools had sensitization training for their staff and students about HIV because many people are misinformed about HIV and have outdated perceptions. I also don’t want other PLHIV to feel the way I did – like we have limited options in life just because of our condition.
Institutions justify their actions as being cautious, but I believe more can be done to improve existing systems so that there are fewer barriers for PLHIV to live and work in Singapore. Although I am on treatment and had an undetectable viral load, I had to start school a week later than my peers because the admission office wanted to first review a detailed explanation from my doctor.
I was so nervous at the thought of not being able to attend school, despite having studied so hard to get the necessary grades. But my doctor reassured me that he would fight for me to get in. It means a lot to me that my doctor has always taken an interest in my education. When he turned up for my ITE graduation, I was so happy and touched.
My doctor and social worker are the most supportive figures in my life. I’ve had a few social workers over the years, and they help keep track of my medical bills, blood test, and doctor visit. Circumstances at home can be a bit strenuous at times so it’s comforting to have someone to share my life with.
Being repeatedly told by my family members not to talk about my HIV status made growing up very lonely. I hit an all-time low when my mum passed away. I was 14 years old at the time and I lost the motivation to take my medication regularly. I felt that it was pointless as the HIV medication would not cure me. I was struggling because having HIV made me feel isolated from my peers, it felt like a great burden on my shoulders.
When I lost the motivation to take my medication, I was in and out of the hospital for a number of years. My hospital stays ranged from two weeks to up to six months, depending on how bad my condition was; the hospital had become my second home. During the last hospitalization, I became scared and was afraid of dying. This was a turning point and from then I decided to take my medication everyday. My doctor, social workers, and nurses helped me a lot to overcome my fear of taking my medication. When I was discharged, my doctor also asked me to text him whenever I took my medication so that I would remember to take it everyday. With all their support and my determination, I have had an undetectable viral load since then and a healthy CD4 count. In my darkest moments these days, I always tell myself that I have the support of everyone who has helped me all these years.
I was 14 when I first shared my HIV status with someone outside my family. My teacher was suspicious because my grades drastically dropped, and I missed school, so she pulled me aside one day and asked what was up. I hesitated to tell her the truth – with my family’s words of caution ringing in my head – but I was also tired of bottling it all up, so I told her about my condition. She was shocked when I first told her, she even asked me if I needed any help in understanding my HIV better. Sadly, I have not been in touch with her ever since I graduated from secondary school.
To be able to speak my truth felt liberating. However, I also learned over the years that not everyone would be as understanding and accepting. I have had a few friends who said “okay” to my face but then later gave me the cold shoulder. Before I revealed my HIV status to other friends earlier this year, I was invited to their Chinese New Year gathering and overseas trips. However, once I told them about my HIV status, I was excluded from both activities. I can’t help but wonder, was it because of my disclosure? Due to my experiences, I am hesitant to tell new people about my HIV status because I’m scared, they will shun me. They reaffirmed what my family has always warned me about and that when I disclose my status with others, I risk getting shunned and made me understand that I need to think twice before letting someone know.
Most recently, I’ve realised that I want to help educate the public by sharing my condition with others. It is important to normalise discussions about HIV. I think that’s the only way the stigma against people living with HIV will change.
I discovered the UequalsU_Sg page through a podcast called Something Private. On it, Caitlin shared what it’s like to have a partner who is living with HIV, and I learned that she wanted to raise awareness about U=U in Singapore. I wrote in to see if I could share my story and Caitlin surprised me by asking if I would run UequalsU_Sg with her. It’s something that I really appreciate because now, I can do something to help reduce social stigma in Singapore. After “coming out” on UequalsU_Sg, I felt braver to share my story with people outside of my family. A recent friend whom I revealed my HIV status to was a schoolmate with who I had been friends for for about eight months. She would always share her problems with me and I felt as if I could trust her and that we would be friends for a long time. So, while having lunch with her, I shared the UequalsU_Sg Instagram page and then told her my story. She has been incredibly supportive, and she recently explained to me her understanding of U=U and I was impressed by it. I’m glad that my instincts were right and she is a true friend.
I hope there will come a day when a majority of people understand what it means to have HIV and how it can be untransmittable when one takes their treatment correctly. I hope I won’t have to explain it and they can find out more by themselves but until then, I would like to be able to keep talking about it, and I am glad if people are open to hearing me out.
Right now, people living with HIV face a lot of stigma in Singapore and this has to change!
Anyone can contract HIV, regardless of age, gender, or sexual orientation. Depending on the society and culture, some people are more at risk of HIV transmission. However, it can be a very manageable condition through effective medication, and with an undetectable viral load, I can go to school, socialise, and have a family. I can live just like anyone else!
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