YOU really promise not to reveal who we are?
I was asked this question first when I eventually got to talk with two HIV-infected persons — Emir and Adam (names have been changed). It’s quite understandable they want my assurance not to reveal their identities in any way.
Nodding my head, I said, “Of course, of course. How can I betray your trust after you both have so kindly granted me this interview? I have also prepared the assurance you asked for in writing. Here it is.”
Emir took the confidential promissory note, read it, smiled and said he was ready.
We met at a hawker stall in town — one of Emir’s favourite eating places. He was wearing his corporate-style attire and looked very professional. So was Adam, who is well-built.
Both confessed they have same sex attraction. And they contracted the virus as a consequence of unprotected sex.
Emir said it was one thing for people like them to put up with the stigma of HIV (human immunodeficiency virus) but quite another to go through the tribulation of having to live with the infection.
He only found out he has HIV in September last year. It came as quite a shock to the 24-year-old, especially knowing he is still young and has a lot of living ahead of him.
Ray of hope
He knew he would be shunned and even despised due to the common misconception that HIV is as contagious as the flu. Most people think the virus can be caught by being near an HIV sufferer — which is not the case at all.
Emir said the virus could only be spread through certain bodily fluids such as blood, semen or breast milk but could not be passed to others, for example, through sneezing, touching, sharing food and utensils, and kissing.
He counted himself lucky to have a trusted friend such as Adam who was infected much earlier — in July, 2015. Adam has imparted a deeper knowledge about HIV to Emir, bringing the latter a much needed ray of hope that he would not ‘simply die soon of the infection’.
“Had Adam not encouraged me to go for a blood test, I wouldn’t have found out the truth. I never expected I could be infected as I never felt really ill besides the two weeks of high fever I got at one time,” Emir recalled.
At this juncture, he took a last puff of his cigarette, blew out a thin stream of smoke and put out the cigarette butt in an ashtray. He then took a sip of iced lemon tea and said pensively, “In fact, I had no idea how long I had been living with HIV before I found out about it. The last time I went for a whole body check-up was when I was 21. But I was fine then despite being active in same gender sex for quite a while. Actually, I was already involved in non-penetrative sex when I was 14.”
Emir said it was only recently that he felt something “not quite right” with his health. He not only had high fever more frequently but was losing his appetite as well. He began to smoke and drink more, often complaining of feeling exhausted easily. He was not worried about his body size because he thought his slim figure was due more to his high metabolic rate. In truth, he was losing weight all the while. He just did not realise it at the time.
Emir, an SPM holder working as an event and corporate relations officer, now knows people living with HIV (PLHIV) can continue to lead a normal life if they know how to take care of themselves. Both he and Adam are participating in the MSM (men with same sex attraction) outreach programme of the Sarawak AIDS Concern Society (SACS).
(From left) SACS committee members Moratha Mariana, Colin Nicholls, Yuwana Podin, and Puspa.
Chemsex
Continuing his narrative as a PLHIV, Emir said from Form 2, he was already into non-penetrative sex, and from Form 5, he started drinking and “graduated to penetrative sex with some kind of protection”.
Then around age 21, he ventured into chemical sex (chemsex), a type of activity using drugs to facilitate sex. It happened when he met 38-year-old Eddie (name has been changed), the first guy to start a steady relationship with Emir. And it was Eddie who introduced him to chemsex.
According to Emir, sex among homosexuals can be categorised into Top, Bottom and Flexi. In the case of Bottom, penetrative sex is involved. Virgins sometimes use poppers, a liquid drug for easy anal penetration. The drug is inhaled to induce the ‘high’ or ‘rush’ and mainly used for its relaxing effects on both the nerves and muscles.
“For me, I don’t use poppers. I did once and got a blackout as my body couldn’t withstand the effect. I go for chemsex. We also use condoms for protection,” he said.
He added that between 2013 and 2014, chemsex was getting popular among homosexuals because of its great ‘high-rush’ effect, noting that “only the original is safe — other types can be poisonous”.
Meeting Joe
While Emir would stick to just one partner, Eddie became increasingly obsessed with a gay-dating app called Grindr. Their relationship suffered as a result, and soon, the inevitable happened — they drifted apart.
Not long after, Emir met a guy named Joe (name has been changed) from Kuala Lumpur on social media.
“He gave me a surprise visit on Valentine’s Day. Soon we introduced ourselves to each other’s parents. My mother, of course, thought Joe was just my close friend because she didn’t know about my sexuality yet. I became so involved with Joe that I quit my job and went travelling with him.
“At one time, I even wanted to move to KL with him but my heart told me not to leave my father, mother and my younger siblings behind. My relationship with Joe lasted eight months after which he simply vanished from my life — not even a goodbye. Throughout our time together, I never found out about his background.”
Dysfunctional family
Emir is the eldest in a family of a dozen siblings. He could be said to come from a dysfunctional family. His father is a reformed alcoholic and gambler, who used to be abusive towards his family.
Emir said he once watched in horror as his father nearly threw his younger siblings from the fourth floor of a flat while high on glue. He was thankful his father still had some good in him not to go through with it. Many a time, Emir thought he would just commit suicide to get away from all the pain.
“My father was also addicted to cockfighting. Because of his gambling habit, he was unable to provide for the family. He often hit my mum and stole her jewellery to sell for cash. Such was the predicament I faced at the time that it gave me a lot of stress. Where could I find the warmth and love of family? It hit me hard indeed.”
Emir said 2014 was his worst year because everything was falling apart — his relationships and career, the death of his grandmother, the problems at home, not to mention his failing health.
“Apart from all these traumas, I felt ill most of the time,” he noted.
He tried in vain to block out the heart-wrenching realities around him. Feeling lost and despondent, he quit his job and had to live on what little savings he had. He was in a state of depression and often cried when he thought about all the things his father had promised him, including sending him for driving lessons and further studies. They all turned out to be broken dreams.
Emir said his mother was a loving and hardworking woman. He felt hurt to see the scars she bore from the unkind treatment of his father. There was just too much pain at home. Furniture was often damaged in the heat of a quarrel.
“We were all in a helpless state, seeing the man of the house turning into something of a monster and declaring himself king of the world,” Emir remembered.
His father’s brutish behaviour got worse and worse, and one day before Emir entered secondary school, his mother decided ‘enough is enough’ and in a fit of rage, got hold of a parang to slash his father.
According to Emir, his father turned over a new leaf after the incident. He stopped his abusive behaviour as if an evil spell had been removed from his soul. He started rebuilding his life and providing for the family.
“For all his faults, I cannot deny he is still my father and I am sure glad he has mended his ways,” Emir said.
His father, now a businessman, is already 70, while his mother is 65.
Schooling years
Emir remembers being targeted by bullies in school because of his effeminate ways. They taunted him and called him a pondan. He was once even falsely accused of performing oral sex on a 75-year-old school security guard and was caned for it during school assembly.
Emir had a diary which he used to bring to school. One day, it went missing but resurfaced later with additional handwritten entries saying bad things about him. The malicious jibes were photocopied and circulated widely in school.
Despite his sad and tormented life, Emir was a bright student, scoring straight A’s in Ujian Pencapaian Sekolah Rendah (UPSR) and Penilaian Menengah Rendah (PMR). He only failed one subject — Additional Mathematics — in Sijil Pelajaran Malaysia (SPM).
From a young age, he was always looking for ways to earn pocket money and when he got older, he found a job in a bar where he learned to drink and smoke.
Not a choice
At 18, Emir got his first proper job as the youngest business development executive in a company — something he is very proud of. But he then kept switching jobs before finally deciding to stick with the one he got last year.
On his homosexuality, Emir said, “It’s not my choice to be born this way. It’s not a path we choose to take but something we feel inside — just like the attraction heterosexuals feel for the opposite sex.”
He revealed his mother knew nothing of his sexuality until he told her he had a boyfriend in 2015. Now that he has come out, she accepts him for what he is.
“After I told her, she cried a bit, perhaps out of sympathy for what I have been through.”
His father, however, does not know he is a homosexual, thinking his eldest son only has a girlish nature as he often sees Emir wearing light make-up and drawing his eyebrows.
Asked whether his company or co-workers knew about his health status, he said he preferred it to be kept strictly confidential due to the stigma towards PLHIV. The only people who know about his infection are his mother and a few close and trusted friends.
Adam’s story
Adam, in his 20s, had been listening quietly to my chat with Emir before talking about his own experience as an HIV sufferer. Although diagnosed with a reactive HIV test in July 2015, he already knew he was in trouble some eight months earlier after he and his partner contracted a sexually transmitted disease — gonorrhoea. Both were subsequently found HIV-positive.
A few weeks later, Adam said he contracted a fever so bad that he had to constantly stay in bed.
He sweated profusely at night, had recurrent diarrhoea and was losing weight. These, he noted, were classic symptoms of HIV infection.
In February 2016, he was put on HAART (Highly Active Antiretroviral Therapy), thankful that such a treatment (first line medication) is readily available in Malaysia at no cost.
Needless to say, his PLHIV status has subjected him to discrimination even from some medical practitioners. He is in constant touch with other PLHIV in the country and often hears about the prejudices against them as well.
Adam said a fellow PLHIV was recently turned away by a dental clinic on the assumption that his saliva could infect other dental patients. This is, of course, totally untrue.
On his first reaction after finding out he had HIV, Adam said, “I’d be lying if I say I wasn’t devastated. The irony was I had been formally educated on the subjects of HIV and AIDS, yet made the mistake I was not supposed to. But now, I think of it as my own carelessness and stupidity. As the saying goes, for every action, there is a reaction. My case is a perfect example of this.”
With the damage already done, he said all he could to do now was challenging himself to prove he is “a strong person inside and outside”.
“I remember what people often say — what doesn’t kill us makes us stronger. So here I am, trying to stay positive and strong.”
Dilemma
Asked whether he is in a relationship and, if so, how he is coping, Adam replied it is complicated because coming clean about his HIV status could mean making or breaking the relationship with the people he dates.
To tell or not to tell — that’s the dilemma he is facing.
Adam believes knowledge is power. He said besides trying to learn as much as he could about HIV, he would also make sure his ‘other half’ is equally educated and enlightened, especially on the many misconceptions about the infection.
“People naturally fear the unknown. So to overcome that fear, the first step is to make known what is being feared,” he said.
“Once your partner gets the picture and understands what you are going through and accepts you for what you are, it can then turn out to be the beginning of a wonderful relationship. Of course, if your partner doesn’t want to accept you, then you have to accept reality. Most probably, that was your partner’s real feeling from the start. In that case, your partner doesn’t deserve you at all.”
On the precautions PLHIV have to take and the medical aspects of the infection, he said protection is important and it could be as simple as using condoms during sexual activity.
A study has suggested that having ‘undetectable viral load’ in the blood reduces the chances of transmitting the infection to zero.
According to treatment advocates, an undetectable viral load means the level of HIV in the blood is below the threshold needed for detection by a viral load test which is a measurement of the amount of HIV in the body.
If the viral load is considered undetectable, it means the medication is working.
Evidence shows that an HIV positive person with an undetectable viral load has substantially reduced risk of passing on HIV to sexual partners.
For PLHIV, their sole mission is to achieve undetectable viral load to avoid transmitting the virus in case of contraceptive malfunction. However, PLHIV should also take greater care of themselves because their immunity to illnesses is lower than normal. They must be very disciplined in taking their medication.
Pill training
Adam said he has been prescribed Tenvir EM and Efavirenz, adding that taking such medication is no different from taking other long-term medication such as for diabetes or hypertension.
He said PLHIV would first start with what is called ‘pill training’, which is basically taking vitamin pills along with Tuberculosis (TB) medication. The latter is to protect PLHIV from TB infection or their latent TB from becoming active because of their weak immune system.
Pill training is actually a regime imposed on patients to monitor their habit of taking the pills at prescribed doses and times. Moreover, the training is to find the most suitable schedule for PLHIV to take their medication while they are already on HAART.
Asked if he has ever been discriminated against at his workplace, Adam said it is necessary, by law, to disclose his health status if the nature of his work came under the high risk category.
According to him, in 2001, the Department of Occupational Safety and Health (Dosh) issued an anti-discriminatory code of practice for managing HIV-AIDS workers.
Adam said he has by now gotten used to living with HIV — always keeping his medication close by, especially when travelling. He believes the infection has made him a stronger and more determined person by challenging him to face his health problem. More importantly, it has steeled his will to succeed and given him purpose in life.
Adam said there is still hope, and life, for PLHIV because unlike 30 years ago, HIV is now not considered a terminal illness, pointing out that the important thing is to stick strictly to the prescribed treatment regime.
“You will learn to enjoy life more after knowing you are given a second chance. You may need a good support system. A family member or a good friend who knows your condition can be a good listener when you need someone to talk to.
“It is your fight and having someone’s support helps you to soldier on. Thankfully, the Sarawak AIDS Concern Society is there to render further support, if needed.”
Adam appealed to the public not to be unduly fearful of PLHIV.
He said if the public learned more about the infection and how it spread, they would know the common flu is much more infectious than HIV.
He also called on those in the medical field to hold themselves to the highest level of professionalism by refraining from stigmatising and labelling people living with HIV, saying they were the ones who should know better.
“Fight the disease, not the patient,” he suggested.
Adam said he is fortunate to have understanding friends who treat him as a normal person and are not afraid of him, adding that they shared food with him and would even take a bite from the same dish.
Adam is grateful for the support of SACS, which is the only NGO dealing with HIV-AIDS issues in the state.
He hoped the society could recruit PLHIV allies and volunteers to help with its mission.