S’pore man, 40, living with HIV: Hardest part is being 'in the space of half-truths'

Ben (not his real name) thought he was just going for another routine check-up in July 2018.

He found himself reeling from shock, however, when he was told that he’d tested positive for the human immunodeficiency virus (HIV).

“Why is this happening?” he thought to himself, as the news sunk in, bringing to mind an old friend who had HIV and passed away some 20-plus years ago.

Over the course of those 20-plus years, advances in medicine have actually turned the fatal infection into a chronic condition.

Today, medication, together with a healthy lifestyle, can help someone living with HIV keep the virus under control — meaning that it will not necessarily develop into Acquired Immunodeficiency Syndrome (AIDS).

But Ben’s memory of what happened to his old friend still lingered. “There are those remnants of those fears,” he says.

“Having known someone who had passed away from it back in the 90s, you tend to go back to that space rather than say, ‘Oh, okay, this is something that is highly treatable’.”

While Ben was aware about the virus and the availability of medical treatment, he never imagined that he would be one of those who needed it.

“You constantly think that it will never touch you.”

Opening up to friends and family

After receiving the news, it took him one full day before he shared it with anyone.

A big part of how Ben overcame this was having a friend who was living with HIV. This person was able to serve as his “first touchpoint” and help him navigate the initial uncertainty.

The first — and very critical — piece of advice Ben received from that friend was to see a doctor as soon as possible.

“It was rather natural for me to turn to him to be like, sort of the first person to talk me through certain decisions, you know? And I guess it could have swung the other way where I would have been like, ‘Okay, I want to delay seeing the doctor’.”

With the help of someone who had already been through it, Ben was then able to prepare himself for what was to come.

Ben could also prepare himself before opening up to friends and family, as HIV testing in Singapore is done anonymously. This means that those who take a HIV test will not have their identity revealed, and do not need to provide their name, NRIC number or contact number.

Instead, a number is assigned to the test, so that the person being tested can receive their results.

The clinic administering the HIV test does not record personal particulars, even if the result ends up positive.

With this, Ben was able to keep the news of his diagnosis within a close group of friends and family and did not get any negative reactions from anyone he told.

However, Ben said that one of the most important pieces of advice he received was: “Don’t underestimate the internal shame.”

As a “rather optimistic”, “seemingly happy-go-lucky person”, Ben thinks that he might have otherwise overlooked the double whammy of needing to cope with the news on one hand, as well as adjusting to being on medication on the other.

It took Ben “a long while” before he began to share the news with more people.

“There’s a sense of shame to it… I think it was more my own fears about how people around me might react.”

In the midst of this, he was also going through the initial phase of taking HIV medication.

Ben remembers worrying about what the medication was doing to his body, beyond the “minor side effects” of having it affect his stomach.

This initial phase lasted three to six months, before a change in medication helped to stabilise things.

A process of appreciation

To Ben, the past three years of living with HIV “has been a process” of learning to appreciate how he is fortunate enough to be managing considerably well.

He’s also come to appreciate that it requires “quite a lot of resources” just to navigate the first year of a HIV diagnosis.

Antiretroviral medication (also called antiretroviral therapy or ART) is costly, especially if it is purchased outside of government hospitals. Plus, the costs of doctor visits and laboratory tests all add up.

That said, since last year, 16 medications used for ART have been added to the Ministry of Health's list of subsidised drugs.

This means that patients requiring HIV medication can now receive subsidies of 50 per cent or 75 per cent, depending on their status after means testing.

Ben acknowledges that he’s “fortunate” to not have needed to worry about how he would pay for the medication, however.

There are other ways that Ben counts himself lucky. Aside from the friend who was his first “touch point”, Ben has a close group of friends who functioned as his “support group”, something that was a big help for him.

He also considers himself fortunate to have been able to seek help from a professional therapist.

“I think the therapy also helped because you get... maybe a more neutral voice… Because I mean, there is quite a lot to navigate there.”

“Being in the space of half-truths”

Ben explains that he’s now settled into a state of calm, and that he’s developed a steady routine of taking medication, and annual visits to NCID for routine blood tests.

The antiretroviral medication that he takes regularly keeps his HIV viral load to a level so low that it is undetectable and non-transmissible.

“Physically, I feel pretty good,” he says.

Also, the team at NCID that Ben has met have been “extremely, extremely professional”, making the yearly visits feel more like “just an anniversary thing”.

There has also been an unexpected silver lining, in that regular blood tests help Ben watch his health more conscientiously, keeping a close eye on his cholesterol levels and so on.

“Almost everything is sort of in place,” says Ben who considers himself to have “a happy balanced life” — keeping healthy, and being able to work, and to pursue his interests.

But there is a “missing piece” in the equation.

“While it all sounds quite nice, it’s definitely still very much a medical status that most of us would keep largely under wraps.”

What Ben’s still grappling with is what he calls “being in the space of half-truths”.

He finds himself constantly asking questions like, “Do I need to tell people?” and “Why do I have to second guess?”

For example, Ben has been paying for his HIV medication using MediSave.

His insurance providers are aware of whether his MediSave is topped up or not, and have sent him alerts about his MediSave balance.

“I can bet you that they're also wondering what am I paying for. Like, what's wrong with me. [But] I'm definitely not ready to be telling them [about my HIV positive status].”

This second-guessing can spring up unannounced in day-to-day interactions too.

Once, a taxi driver picked him up to go for an appointment and asked why he was headed to NCID.

Not wanting to cause the driver unnecessary alarm, Ben told him that he was going there because of his work.

“If I were to go to, like, the National Heart Centre, or maybe, like, the Cancer Institute, or wherever, I don't think I would be worried about like [the consequences] if I really told the truth.”

In Ben’s mind, there is still “a certain sense that [some may think] it’s very communicable” — as he can never be sure if the people around him understand the science fully enough to not keep him at arm's length.

Of course, the scientific reality is that HIV cannot be spread through casual contact, via saliva when sharing food or drink, even if utensils are shared. Nor can it be spread through mosquito bites.

“Not that I feel that these people are judgmental people,” says Ben. Rather, he sees it as “still very much a toss-up” in terms of whether the person will have an adverse reaction.

The "missing piece"

A big part of finding the "missing piece" in Ben’s puzzle is public awareness of HIV, and the fact that it can be effectively controlled with proper care. By taking HIV medication, people with HIV can live long, healthy lives and protect their partners.

This year, the National HIV Programme started a public education initiative, #HIVPOSITIVITY, ahead of World AIDS Day on December 1, to share crucial information about HIV with the public and to put a stop to discrimination and stigmatisation against people living with HIV.

Campaigns by the National HIV Programme and their partners are to dispel the lingering misconceptions that some may have in their minds and start forming the much needed "missing piece".

This article brought to you by the National HIV Programme (NHIVP), National Centre for Infectious Diseases (NCID) made the author think about half-truths.

Top image via Ahmed Nishaath/Unsplash