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Living with HIV: What I want people to know

By Hoe I Yune, Dec 03, 2020

24-year-old Singaporean Nurafiqah has been living with Human Immunodeficiency Virus (HIV) since she was born, and has mostly kept it a secret until recently. She is currently pursuing her electrical engineering diploma at a local polytechnic.

Worried that she would be treated differently if people knew of her medical condition, her family advised her to stay quiet. But Nurafiqah wants to speak up. She wants people to know that with the right medical treatment and an undetectable viral load, people living with HIV can lead long, healthy lives, with effectively no risk of transmitting the virus to others. HIV is not a death sentence and doesn’t necessarily lead to AIDS. 

In early 2020, she joined social media platform UequalsU Sg (undetectable equals untransmittable), which seeks to spread awareness on effective medications for HIV and combat HIV stigma. It takes a leaf from the international U=U movement, which was introduced in 2016 by international health equity initiative the Prevention Access Campaign to help end the HIV epidemic and HIV-related social stigma.

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I was born with HIV. There is no cure for HIV right now. But this is what I want people to know: with prescribed medication and blood tests every three to four months, it is untransmittable and I can manage the virus. Treatment works to reduce the copies of HIV per ml in my blood so that it becomes untransmittable. When managed, I can go to school, socialise, and have a family — just like anyone else.

For as long as I can remember, my parents brought me for regular medical check-ups and I was made to take prescribed medication daily. But it was only at age 12 when I overheard a conversation between my parents and doctor that I learned I had HIV. I thought the daily medication I had been taking were vitamins. I felt angry to have been kept in the dark but I grew to realise that they were trying to shelter me from what they thought would put me at a disadvantage in society. 

In the past year, I’ve come out of my shell, starting by speaking publicly on UequalsU Sg as a person living with HIV. I realise that people are interested in my story and curious about my experiences as a Malay-Muslim woman living with HIV. Many people associate HIV with gay men and sexually transmitted, and I want to debunk these stereotypes by sharing my truth.

I contracted HIV from my mother who was unknowingly living with HIV. Truth be told, I don’t know how she contracted it. But it led to me contracting HIV through perinatal transmission, which can occur during pregnancy, labour, delivery or breastfeeding. If an expectant mother is on treatment, the transmission can be prevented. Unfortunately in our case, my mother only found out she was living with HIV after giving birth to me. She was neither prepared nor on any treatment.

Had she known, she could’ve taken the necessary precautions like taking HIV treatment to have an untransmittable viral load and getting a caesarean section to avoid transmission during the labour process if necessary. Newborn babies could also be given liquid HIV medication for four to six weeks to ensure that no infection takes place.

Here’s the thing: with an untransmittable viral load, people living with HIV (PLHIV) can also conceive children like anyone else, although it’s always advisable to speak with your doctor for advice that works for you.

In my family, we hardly ever talk about our feelings and there has always been an emphasis that I should not mention my medical condition outside of our household. I think they fear that I would face stigma and discrimination. For family members who do not have HIV, they think I shouldn’t air my “laundry” in public, even though I just want to educate people and reduce HIV stigma. There is the stigma that HIV is a sexually transmitted disease and for women especially, there’s the belief that to have HIV means you’re “dirty” or sexually promiscuous. As a Malay-Muslim woman, there is the added pressure to dress conservatively and to not have sex before marriage. If I mention that I have HIV, people might jump to conclusions.

Growing up, there have been instances when I felt frustrated and upset because others showed prejudice and made assumptions towards PLHIV, possibly because they didn’t understand what it meant to live with HIV and how it isn’t always contagious.

I was treated differently by former friends, a lecturer, and administration staff after revealing my status. I don’t think there’s enough information out there on HIV, which is why individuals — well-intentioned as they might be — can have misguided notions about my capabilities. 

Before being more open about living with HIV this year, I passed my medication off as vitamins whenever I am out with friends to avoid questions. There have been times when I confided in a few friends and while they seemed accepting to my face, they subsequently gave me the cold shoulder. Some went as far as to block me on WhatsApp and social media.

Friends uninvited me to Chinese New Year gatherings and overseas holidays once they found out I have HIV.

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 hospitalised mid-way through the internship. When I shared my dreams to pursue engineering at a prestigious polytechnic, he told me to aim for a less demanding school and job.

Some people, even the highly educated, don’t seem to be aware of how HIV can and cannot be transmitted. After declaring my status in the school admissions application form, I was pulled aside by the administration officer and from the look she gave me and tone she used, I sensed that she thought poorly of me. She asked me a bunch of questions such as how I contracted it and if my classmates would be infected by sharing food with me. It made me realise that some people are quick to leap into conclusions surrounding PLHIV as they are not properly informed themselves.

As long as my HIV is managed by the treatment, I am no more prone to fever and flu than the everyday person; neither do I have diet restrictions. I’ve also never been advised by my doctor to avoid any kind of career path.  

In a year or so, I will be job hunting, and I’m afraid that my medical condition might stop me from getting hired. It might not be mandatory by law for individuals to disclose their HIV status to employers and schools but I am concerned that companies will be prejudiced because of my medical condition. According to TAFEP’s (Tripartite Alliance for Fair and Progressive Employment Practices) guideline, we don’t have to declare our status to employers unless it affects our ability to perform the job, but I found it unsettling to read in the news that PLHIV claimed to be terminated after employers found out their status. As much as I believe that companies and employers have their own rationale, I am wary that a lack of education might cloud their judgment. Many employers are unaware about U=U and might think that PLHIV are sickly and unfit to work, or that we might apply for sick leave too often. Foreigners who are HIV positive are also prohibited and unable to gain employment here.

Institutions justify their actions as being cautious, but I believe more can be done so that PLHIV don’t unnecessarily feel as if we are stigmatized or have limited options in life. As it is, I only need to see the doctor once every three to four months to stock up on medication and for a blood test. 

My hospital admissions only occur if I do not take the medication, which looking back, I know was irresponsible of me. Growing up, I was constantly told by family members not to talk about my HIV status and it made me feel very alone. To be different feels like a great burden and the secrecy didn’t help. I struggled with how isolated I felt from my peers and hit an all-time low when my mother passed away. I was 14 the first time I lost the motivation to take my medication regularly. I felt that it was pointless as the HIV medication would not cure me.

I kept asking myself, “Why me?” I didn’t dare take my medication in front of my peers because I was afraid they might probe, but when I did not take my medication, I had to be admitted into the hospital.

The hospitalisations ranged from weeks to a month. During the last hospitalisation in 2017, my condition deteriorated so badly that for a moment, I thought I was dying. I became scared and realised I couldn’t waste my life like this, and from then on, I’ve resolved to always take my medication. There were pills that were difficult to swallow and the doctors suggested that I grind them and mix them into ice cream. That was helpful and I liked it best with chocolate ice cream. 

It has since been about two years — the longest I’ve gone without being hospitalised, and I plan to stay strong. In my darkest moments, I remind myself that I have the support of my doctor and my social worker, and that there is so much more I want to live for.

I reflected a lot about what has been done and what can be done for PLHIV but I didn’t know what I could do as an individual. I thought of speaking up but I wasn’t sure how to. It was only when I tuned in to a podcast called Something Private did it finally click. On the particular podcast episode, Caitlin and her boyfriend Marcel shared what it’s like living with HIV, and how they want to reduce social stigma in Singapore through UequalsU Sg.

I realised that if 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 PLHIV will change.

Caitlin and Marcel’s openness and bravery in sharing their journey struck a chord in me and I wrote in to see if I could share my story. I too wanted to play a part in helping others feel less alone. It’s what my younger self would’ve wanted. In response to my email, Caitlin surprised me by asking if I would run UequalsU Sg with her.

Today, I feel more empowered to share my journey. In speaking up, I’ve also learned to be prepared to answer personal questions and that it is okay to ask someone to respect my personal boundaries. Nevertheless, it takes time to drive change and I want to play my part in continuing the conversation.

My doctor who is familiar with U=U as an international movement has helped share UequalsU Sg findings within the medical community. I am very much heartened by how he has been a pillar of support. When my school admissions process was delayed and I had to start school a week later than my peers, my doctor reassured me that he will fight for me to get in. It means a lot to me that he has always taken an interest in my education and even turned up for my ITE graduation. Other motivational and supportive figures I’ve met include my secondary school teacher. She was the first person whom I shared my condition with outside of my family. She reassured me that I could reach out if I needed help.

I’ve learned to walk away from friendships when someone is rude and unaccepting but I find comfort in knowing that there are many others who are kind, supportive, and willing to support me and PLHIV.

Caption: UequalsU Sg founder Caitlin (in green) and I connected over our shared vision to help people break out of the mindset that PLHIV are dangerous to be around.

Caption: UequalsU Sg founder Caitlin (in green) and I connected over our shared vision to help people break out of the mindset that PLHIV are dangerous to be around.

To be able to talk about my struggles is liberating, and the support from my friends has encouraged me to open up on things I might have previously shied away from. I texted an ex-boyfriend from when I was 17, finally feeling ready to explain why I was so evasive in the past. While we were dating, he knew I had a medical condition but I was apprehensive about sharing the complete story with him, afraid that my situation would be misunderstood or taken out of context somehow. Since meeting Caitlin and sharing my story publicly, I’ve realised that to come clean about it makes me feel capable of being myself.

I hope there will come a day when people understand what it means to have HIV and how it can be untransmittable. I hope there will come a day when I will no longer have to explain it. 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. 

Photos provided by Nurafiqah. Find out more at @uequalsu_sg on Instagram. 

Prior to publication, we spoke with a Singapore Consultant Infectious Diseases and HIV physician in public service to ensure factual accuracy in terms of how effective medical treatment can manage HIV. The physician has requested to remain anonymous as their opinions might not reflect their organisation’s. We’d like to emphasise that it is always best to consult with your trusted healthcare professional for advice tailored to your situation.

Should you wish to learn more about living with HIV, Action for AIDS (AFA) is a social service agency in Singapore that promotes prevention, education, and advocates for people living with HIV and AIDS. You can find out more about available care and support programmes or book an appointment for an anonymous testing service at https://afa.org.sg/. AFA also provides guidelines for Singapore companies and advocates for PLHIV so that employers understand how the treatment process works and under what circumstances it is not transmittable.

We’ve also spoken with a TAFEP spokesperson on how people with HIV should not be discriminated against when seeking employment or when in employment. They’ve shared that the Tripartite Guidelines on Fair Employment Practices (TGFEP) requires all employers to recruit and select employees on the basis of merit. This means that employers should only collect information relevant to assessing an applicant’s suitability for a job and not include self-declarations about medical conditions in job application forms unless they can adequately explain the relevance of the information. Employers should take initiative to better understand HIV so that they are able to attend to sensitive issues when it comes up at the workplace. If an employer is found to have breached the TGFEP, TAFEP would work with MOM to take appropriate enforcement actions against the employer, on the grounds of discrimination. 

Tomorrow, we’ll be sharing UequalsU Sg founder Caitlin’s journey on being in a mixed status relationship with her boyfriend Marcel. As a mixed status couple, she is HIV negative, while he has been living with HIV since 2015. 

Writer’s Note:

My name is I Yune, and you can find me at @i_yune on the Dayre app. On my personal account, I write about normalising conversations about sex and mental health, as well as trying to educate myself on social issues.

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