Living with HIV: How my boyfriend educated and inspired me
By Hoe I Yune, Dec 04, 2020
In the last story, we heard from Nurafiqah about living with Human Immunodeficiency Virus (HIV) in Singapore and the stigma she faces. Today, we highlight another area where people living with HIV face discrimination or lack of awareness, and that is in their romantic relationships. We hear from 23-year-old university student Caitlin, who is helping to drive the U=U movement in Singapore through UequalsU Sg.
The international U=U movement stands for undetectable equals untransmittable and seeks to spread awareness on effective HIV treatment and combat HIV stigma.
Caitlin was inspired to kickstart her advocacy after learning about the movement from her boyfriend Marcel. As a mixed-status couple, she is HIV (Human Immunodeficiency Virus) negative, while he has been living with HIV since 2015.
Caitlin and Marcel met while on a university student exchange programme in Japan, then made their relationship official in January 2019. In November 2019, she founded @uequalsu_sg on Instagram. The account sheds light on how HIV can be managed and it has since inspired locals living with HIV to speak up about their personal experiences.
Before meeting my boyfriend Marcel, I understood very little of what it meant to live with HIV. I thought to live with HIV meant you absolutely had to have sex with a condom, that you had to take a dozen of pills a day, and that you might be sickly. My mental images of HIV were either wrong or severely outdated.
I didn’t know that if you undergo treatment for HIV, the copies of HIV can be reduced to a very low level that it becomes undetectable. With an undetectable viral load through effective medication (in Marcel’s case, it’s one pill a day), you can manage the chronic condition.
With effective treatment, someone with HIV can have sex without a condom and women with HIV can have children without HIV. It is possible that the medication might be ineffective for a small minority, so when Marcel visits his doctor every three months to get new pills, he also gives a blood sample for lab-testing. The lab tests check if his viral load remains undetectable.
The normalcy of Marcel’s way of life made me realise how there’s a lack of HIV education in Singapore. As an activist in Germany, he has been involved in the Deutsche Aidshilfe’s #Wissen-Verdoppeln (double the knowledge) campaign to raise awareness about U=U, living with HIV, and medical advances. I feel that people living with HIV (PLHIV) in Singapore don’t get enough visibility. Whenever PLHIV is mentioned in the news, it tends to be a negative portrayal — like someone being sent to prison for lying about his status and donating blood. There is also insufficient sex education about HIV in Singapore’s schools.
If there were greater awareness that could help someone with HIV envisage what life could be like, maybe more people would be more forthcoming with voluntary screening. According to non-governmental organisation Action for AIDS (AFA), only 19 per cent of newly reported HIV cases in 2019 were from voluntary HIV screening.
There is not much public information on what life with HIV can be like, so people fear that their life ends when they get HIV.
But it’s important for people to go for testing and get diagnosed early because that enables early treatment and better results.
In Germany in 2015, Marcel found out he had HIV when he took a test after engaging in condomless sex. HIV is transmittable without a condom if the PLHIV has a detectable viral load. Having already been going for mental health therapy, he managed to stay quite calm when approaching Berliner Aids-Hilfe for the test.
His doctor’s bedside manner was also incredibly comforting and said, “Oh, it’s HIV. It’s not something worse.”
Marcel waited for a couple of years before telling his parents. They cried but accepted it quite easily because they already had the knowledge that with the right medication and treatment plan, he’ll be able to live a fairly normal life. Their bigger concern was that he wouldn’t be able to find a life partner. Now that he has me, they have been very welcoming and supportive of our relationship.
Marcel and I met while studying in Japan. I’m from Singapore, he’s from Germany, and we lived in the same dormitory. We went out for the first time when we both turned up for a school excursion that, unbeknownst to us, had been cancelled. We ended up hanging out and found that our interest in social issues, politics, and cultural events overlapped.
I was fresh off a breakup and noticed him dating another guy so I thought he was gay. I later learned that he identifies as queer. We officially got together on New Year’s Day, ringing in 2019 with a kiss.
I already knew he was living with HIV. We were at a university cultural event when he said he had to head back to take his medication. I asked if he was sick, thinking maybe he had a fever or flu. He said “No, I’ve HIV”. I was taken back but I didn’t want to sound ignorant, so I waited until I was back in my room and Googled for answers.
Only after that did I speak with him about it, trying to find out more about how HIV affects the way that you live. When getting together with Marcel, I had tiny qualms that HIV transmission was possible, but I chose to believe in science. It was challenging to process all this new information at first and I needed time to fully trust in the science of U=U.
I am grateful that Marcel answered my questions about HIV and his medication. Marcel also regularly attends seminars and conferences related to HIV, and he often shares insights with me.
There might not be enough scientific evidence to prove that PLHIV can donate blood but I believe in the studies that show PLHIV who take their medication daily and are on effective treatment can have sex without transmitting the virus.
The PARTNER I study, which started in 2010, surveyed gay and straight couples over the course of one to four years, proved that condomless sex between mixed-status couples didn’t result in the HIV transmission if PLHIV have an undetectable viral load*.
In November 2019, I visited my doctor in Singapore for my regular medical check-up, and to my surprise, she said there is always a risk of HIV transmission, even if my partner takes his medication. She said that I must use a condom with my partner, even during oral sex. Her advice left me very confused because it contradicted what I had learned through U=U.
I was very worried I had somehow contracted HIV from my partner and sought a second opinion from another doctor who was also a general practitioner and took a HIV test. My second doctor acknowledged the research on U=U and that PLHIV on effective treatment cannot transmit HIV during sex. But he explained that as a doctor in Singapore, he is obligated to advise individuals with partners living with HIV to use condoms or take PrEP (pre-exposure prophylaxis is an anti-HIV medication)**.
The mixed messaging I was receiving on U=U made me decide to seek advice from Marcel and his HIV specialist doctor in Germany. They reassured me that U=U is backed by scientific studies. I also found corroborative statements from the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Centers for Disease Control and Prevention (CDC).
The stress that I underwent made me wish that there’s clearer messaging about U=U in Singapore’s medical community and society. I think it is key to reducing HIV stigma here!
My test results prove that I did not contract HIV. It also helped to put my father at ease. He knew about U=U but he really wanted proof for some peace of mind. My parents accept Marcel although my father was initially worried when he saw a Facebook livestream video of Marcel sharing about living with HIV at a conference.
It’s a good thing that my father takes pride in being well-read and logical, because that incentivised him to listen to existing research on U=U. He had much more reservations about Marcel being queer, but he is coming around and now more accepting and willing to understand what it means to be queer.
Over the years, my father has been reading more about the LGBTQIA+ community and the discrimination they face in Singapore. He recognises that the times are changing and believes that as long as Marcel and I accept and respect each other, he will support the relationship as much as he can as a parent.
When I told friends about Marcel, some were apprehensive at first. Some listened to my explanation of U=U and understood the message. But I knew people who made comments like, “You can never be too safe” and “You should stay away from him”.
I understand that this new information might not be something that everyone can immediately accept because we lack a comprehensive sex education here. But I found it very offensive when they jumped straight into giving unsolicited advice without trying to understand the science. Some comments were made by friends from the LGBTQIA+ community and it made me realise that even within the queer community, there is a stigma against people living with HIV because they’re seen as “dirty”. Feeling unhappy about the lack of awareness in Singapore motivated me to start @uequalsu_sg on Instagram.
I might be an ordinary Singaporean citizen, but I thought reducing HIV stigma could be something that I could do within my own society.
In the short run, I hope to educate people about HIV and U=U to reduce HIV stigma as well as use my platform to amplify the voices of locals living with HIV. In the long run, I hope to mobilise people not living with HIV to rally together and engage policymakers to make changes to the existing system. I wish our laws here could be updated to match scientific progress and better protect PLHIV. Marcel loves visiting and learning about Singapore but there is a lot of ambiguity here, which can make it inconvenient for PLHIV to study or work in Singapore. Foreign nationals pursuing an education or career here need to take a HIV test and because of the way the test is conducted, it doesn’t distinguish PLHIV with an untransmittable viral load.
If we have a family here, what happens? Is there any guarantee that his visitor’s pass will always be renewed? As far as I know, you can’t get health insurance either. Medical treatment for PLHIV is expensive and costs an average of $1,000 to $2,000 a month, and I’m not sure if Marcel will be able to get subsidised treatment in Singapore.
It is my opinion that we should use our laws to build a more inclusive society for PLHIV and not alienate them.
I don’t know if being an advocate necessarily means destroying structures, but I certainly want improvements made to our current system.
I might not be meeting policymakers but I’m grateful to be able to learn from PLHIV and to be able to share knowledge in my own way.
Since founding UequalsU Sg, locals living with HIV have approached me to share their stories, acknowledging that it is the first time that they’ve spoken up about it in public. One person being Nurafiqah, who has had HIV since birth.
I am currently in the final year of my bachelor’s degree. After which I plan to work for a bit, then apply for my master’s degree overseas. I plan to marry Marcel one day and have already told him that I want to be the one proposing. I don’t conform to traditional gender norms, and he is happy about it! I think being proactive fits my personality and I’m having a lot of fun trying to find the best ring design to capture his personality.
From the looks of it, I’ll be applying for my masters overseas then move abroad, because we want to be in a country that is able to provide more clarity for PLHIV and accepts us both. Regardless, I will keep posting on UequalsU Sg and continue my U=U advocacy. It is important to reach more people, especially those not living with HIV. As a society, we have to update our narratives about HIV through open and factual conversations about HIV and U=U. The U=U movement will need allies to spread the knowledge, we cannot expect PLHIV to do all the necessary work by themselves.
* The PARTNER I study is an international study that was published in the Journal of the American Medical Association (JAMA) in July 2016. It looked at the risk of HIV transmission when viral load is undetectable on HIV treatment and found that there were no HIV transmissions after nearly 900 couples had sex without condoms more than 58,000 times.
When used consistently and correctly, condoms are highly effective in preventing unwanted pregnancies, HIV and other sexually transmitted diseases (STDs), like gonorrhea and chlamydia. A Singapore Consultant Infectious Diseases and HIV physician in public service explains that, “The point of these studies is not to say that PLHIV can or should have sex without condoms, but it provides the scientific evidence that PLHIV who have an undetectable HIV viral load while they are on treatment cannot transmit HIV to their sexual partners, even in the setting of condomless sex. This reduces the fear of infection and onward transmission many PLHIV feel. It allows us to advise PLHIV that they will not transmit the infection to their intimate partners, and also that starting families and having children is possible without fear of transmitting the virus.”
Photos provided by Caitlin and Marcel. 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 Tripartite Alliance for Fair and Progressive Employment Practices (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.
Read about Nurafiqah’s journey as someone living with HIV in Singapore here.
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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