12 Jun 2009

Living with HIV - A gay man's personal journey (Part 1)

First in a series of six articles on living with HIV/AIDS - this first-hand account of what it is like to be gay and HIV+ is written by Singaporean SL Yang, who has lived with the virus for more than 10 years.

Testing & Getting Tested

I’ve been living with HIV for more than 10 years. It’s been a journey that has taken me from the depths of despair, through the valley of darkness and up the rocky road of self-empowerment and self-belief - finally emerging to a hard-fought place where I know there is hope and acceptance. Yes, yes, very HBO tele-drama you say - but trust me, if you’ve got the virus and live with it everyday, you learn to become a survivor and you don’t take things for granted any more.

It all began as a routine request - I was asked to go to a lab for tests following the signing of an insurance policy. That was more than 10 years ago – it was a pivotal moment for me, but I did not know it then. When I got to the lab, they asked me to sign a form to OK an HIV test - and they took my blood. When asked when I would get the results, they said in about a week’s time, and that they would call me to inform me. I then went back into my usual routine, and did not think about it - I just pushed my anxieties to the background, telling myself I would deal with the results when they came out.

Then, one day at work, I got a call. The caller identified herself as a staff from the Communicable Disease Centre (CDC) - she said she had got my blood test results and asked me to go back for a further interview. She informed me I was HIV+. I just froze, numbed, trying to take it all in. Luckily it was lunch and I was the only one in the office, having opted to stay in to do some work. The rest of the day passed by in a haze, I remember just going home, going to my bedroom, switching off the lights and then lying on the bed in a foetal position, my head still reeling from the news.

The next few days passed by in a blur. I did things mechanically, barely functioning, and was still in a numbed state. My colleagues noticed the difference, but they kept a respectful distance. I finally went to the CDC for my appointment and was greeted with a battery of very personal and invasive questions, administered by a medical social worker, probing every aspect of my sexual behaviour - from my practice of anal and oral sex to the number and types of partners I had over the years.

My condition was explained to me - and I was registered for treatment at the CDC with a future appointment penned in. I felt like a trapped animal.

Back in those days (the early 1990s) - the medical establishment could only offer hope. On the market was only one anti-retroviral and the mortality rate was still alarmingly high - patients were dropping like flies and in a horrible way, too.

Getting diagnosed as HIV+ was like being given a death sentence, then. But even then, I never regretted getting tested - it’s probably what saved my life. Too often, I have seen patients being diagnosed only when they have fallen very ill and typically succumbed to an Opportunistic Infection (OI)* associated with HIV/AIDS. This means their immune systems are severely compromised already - and even with treatment, the long, hard journey ahead is even made more arduous.

I was diagnosed when my immune system was not as damaged, and I have not succumbed to any nasty OIs that would put me in hospital. I had managed to survive until more anti-retrovirals were developed - I am now on antiretroviral therapy for more about 10 years. So I consider myself lucky - and that’s why I said testing saved my life.

During the time when I was first diagnosed, I had to go through various psychological stages before reaching a resolution. The Kübler-Ross model, first introduced by Elisabeth Kübler-Ross in her 1969 book "On Death and Dying", describes, in five discrete stages, a process by which people allegedly deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss. These are: denial, anger, bargaining, depression, acceptance.

Denial is a defence mechanism - expressed as a conscious or unconscious refusal to accept facts.  I went past this step real fast - after all, on self-reflection I had acknowledged my past actions and could not deny the number of times that I had penetrative sex without condoms. I was not about to lie to myself and just accepted that these actions had made me vulnerable to HIV infection. So I moved on to the next step – anger. At this stage, the person can either get angry with himself and/or others… I used to be an angry teenager – having already dealt with being gay and the discrimination that comes with it. I realised that it was a useless emotion - very draining and not very productive, so I again moved on… to bargaining.

At this stage, depending on your personal beliefs, you can bargain with God and seek to negotiate some sort of compromise. I was atheist at this point, and realised that for this life and death situation I was in, there wasn’t going to be any sustainable solution, and no miracle would happen… I had to rely on myself to pull through. And so I sank into depression. This I did very well, having a predisposition to the morbid and dark side of life. I wallowed in inertia and inaction – barely functioning beyond the mechanical duties of life. I would keep to myself and barely communicate with anyone, preferring to stay in my room all day and not go out at all. This happened for several months, until one day, I was rudely forced out of it quite unexpectedly…

One of my siblings took me aside one day and asked me how I was. As brothers go, we are close but not chummy, and my being gay used to be a sticking point with him at school as it embarrassed him to his friends - that’s water under the bridge. He didn’t seem satisfied with my monosyllabic answers and kept insisting to know how I really was… and then he asked if there was something I wanted to tell him.

It was then that it dawned on me… the insurance agent who had handled my account also knew him. Here I was wallowing in depression and a little self-pity… and my brother had come to burst this bubble. Already, I was in turmoil. I was dealing with my own grief and the baggage that comes with being HIV+ - the discrimination and the stigma. And now, this.

Confronted with a very insistent brother who was prompting me to tell him something he thought I should… what was I do to? I had barely accepted my condition, and here he was, insistently asking me to reveal my condition to him, refusing to go away…

I will reveal what happened next in the second part of this series…

* An opportunistic infection is an infection caused by pathogens that usually do not cause disease in a healthy immune system. A compromised immune system, however, presents an "opportunity" for the pathogen to infect. Some common AIDS-related OIs include: Pneumocystis jirovecii, Candida albicans and Kaposi's Sarcoma

This 6-part series will run every other Friday.