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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.

Singapore

Reader's Comments

1. 2009-06-12 20:54  
Thank you Fridae for this 6 part series. I thank the writer of this series for being so frank and honest about his life story. Can this series run on an every Friday basis instead of every other Friday? Once again I thank SL Yang for your contribution. I would really like to know how you are doing now at present. Thank you Fridae for this series.
2. 2009-06-12 21:36  
SL-
I respect your journey and wish you well. I do, however, question fridae's editorial choice to create a six-part bi-weekly serial...in order to SCARE people into practicing safer-sex-especially during the summer months (for those of us who will be shedding layers of clothes and hitting beaches in the northern hemisphere)????????
EDUCATION, yes, INTIMIDATION, no.
Respectfully questioning everything,
Laoshiyan
3. 2009-06-12 21:46  
Hi SL Yang Thanks for being brutally honest. I think we are relatively sheltered here. In my volunteer work in an AIDS hospice in Thailand, I had the chance to deal with the full-blown stages of the patients I served. The images stay, and so do their love. How are you doing yourself? I hope you are well.
4. 2009-06-12 22:09  
Thank you for sharing...This piece of writing would enlighten us to some untold life experiences.
Sharing story of AIDS related doesnt mean SCARIing ppl. Why cant just you 'modern' ppl take this lightly as a piece of a writing with no agenda behind it. Chill outtt...gee
5. 2009-06-12 22:23  
very interesting indeed... it is one thing t b gay in places like SG/Msia/Indo... but its quite another to b gay & HIV+...

i wish SL all the best!

tt.
6. 2009-06-12 22:48  
Thanks for being so courageous (to recount back) and comfortable enough to share your personal experience.
7. 2009-06-12 22:49  
plugged in,
Thank you so much for sharing your story.
8. 2009-06-12 23:19  
Dear SL,

Thanks for sharing. It must be very difficult to come to terms and now to share. You are very brave. My hope and wishes go to you.
9. 2009-06-13 04:01  
yup thanks for sharing. this is tough to do so, but it certainly will help in 1) minimising ignorance about the illness and 2) helping the gay community be more aware.

i wish you well!
10. 2009-06-13 06:24  
My admiration to SL for his courage. Stay strong. Peace!
We are behind you, well most of us anyways. Only shallow bimbos will be frightened by your plight & they never matter. zzz.

Fridae, don't drag the gap between the parts too far apart lest we forget.
11. 2009-06-13 06:29  
Guess tat explains why most knowing Singapore gays test overseas to avoid being tracked and monitored by the authorities. Tsk tsk.

Obviously, this can't be good to help educate the masses and arrest the problem. Aren't they supposed to be a highly educated system as claimed?
12. 2009-06-13 09:44  
I think it is equally important to educate individuals about honesty, there are many who inform their sexual partners that they are HIV-, but in real actual fact is that they did not get themselves tested and do not even have the guts to.

It is unlike fever, cough or flu, it is a disease that requires testing to confirm. Like the SL, HIV+ individuals are always unaware of their status, and the earlier you find out, thru at least twice yearly testing, the better the chances.

It is an irresponsible act especially when you are a sexually active individual and you are aware of the possiblilty of having the diseases due to unsafe sex.

Authorities should not be blamed on the need to monitor, as it is a regulation to control the disease, especially for sex workers. It also acts as a "law", if you do not want to be monitor, have safe sex and not forget the importance for a moment of pleasure.
13. 2009-06-13 12:58  
While studies and government released statistics reveal the inaccuracies, inconsistencies, agendas, and hoplessness associated with understanding the true nature, scope and impact of HIV on the queer community, the REAL stories of interest, I feel, are from those living with HIV. From these individuals come messages of strength, inspiration and hope. The cure for our general malaise can be found with these few individuals who are willing to share their stories. While the cure for HIV is more likely to come from an obscure "basement laboratory" than out of a state-of-the-art lab from one of the mega-drug giants, the psychological and emotional cures come to us via people like Mr. S L Yang. All of us "matter"....every life has equal worth and value....each and every one of us LGBT persons, whether we are "judgemental bimbos", "spiritually enlightened" or "intelligent, sensitive, caring ones". And I agree with posters before me that eye-droppering out this story in 6 parts over the next 12 weeks smells of "marketing-ploy"...however, I patiently await part 2 in two weeks.....
14. 2009-06-13 13:17  
#13 - I couldn't agree more :)
15. 2009-06-13 17:08  
HIV+ individuals are afraid to be honest about their condition/status because people are still not that open about this matter. Usually they will drown themselves in their own sorrowful episodes of fear and uncertainty. It is time for us to change our mindset towards HIV+ people. They are not to walk this life alone and definitely they don't deserve to be shut out of anyone's lives. It's just plain cruelty. Lend a helping hand and hopefully we are courageous enough to be with them till the end. By making them not thinking of their condition is already a way to improve their quality of life. Smile more. Be happier more. This was what a doctor told a friend of mine who was diagnosed with HIV a few years back. And now, despite his HIV+ status, he is a healthier looking being than he once was. In a way, it prompted him to adopt a healthier life style, which really is saving his life.
Comment #16 was deleted by its author
17. 2009-06-13 20:58  
Dear SL Yang,

It was very brave and compassionate of you to write this. I appreciate your life story, and the fact that we can all take parts of it to be learning experiences for our own lives. Thank you for sharing.

I wish you the very best,
RG
Comment #18 was deleted by its author on 2009-06-13 22:23
19. 2009-06-14 11:03  
Its a shame some thinks this article was meant to scare fridae users out there. Kudos to the writer for sharing his tough times for us to ponder. back in the 80s and 90s safe sex was not really emphasized, and there goes the 'boom'. later people learn and respect save sex more, but recently the young ones seems to be more 'adventurous' and the trend is worrying. hope articles like this would educate them and create a safer community.

Thanks SL Yang.
20. 2009-06-14 15:30  
@laoshiyan This article is a scare campaign, intimidating gay men into having safer sex? Honestly, what on earth are you on about?
I used to think HIV was not such a big deal, after all, hey, these days you just take a couple of pills doled out by the government every day and you'll be fine right?
Not so. A friend of mine had to start taking those antiviral pills - he suffers constant itchy rashes, frequent nausea & diaorrhea, he's put on 20 pounds, some of that as hump on his neck (very sexy I'm sure) but he's lost all the fat on his face: he looks like a corpse - all side effects of his anti-HIV therapy.
But, hey, he's alive and the virus is under control and as long as it is he won't get Aids. But if he misses even just one dose, just one pill, say because he slept in, or coz the pharmacy ran out of medicine, or maybe he just had a big night partying and he forgot: then the virus could become resistant and the treatment will fail. That's some treatment regime!
HIV is no picnic, ulike so many Aids council brochures and campaigns seem to (with all good intention I'm sure) imply.
Sorry, but I disagree. From what I've seen: You do not go climbing mountains like Magic Johnson when you have HIV.
One thing my mate told me stuck with me - he likened HIV to his shadow, to a ghost: it follows you wherever you go, it haunts you 24/7, 365 days a year for the rest of your life. He said "the last thing I know before I fall asleep is that it's there, inside me. The first thing I think of when I wake up is: another day with HIV by my side.
HIV is the most loyal and trustworthy partner I've ever had. HIV will never cheat on you or leave you for someone else."
That sure scared the hell out of me!! And if someone's scared into having safer sex thanks to my comment, then so much the better! This is not something to be playing games with.
Comment edited on 2009-06-14 15:41:40
Comment #21 was deleted by its author
22. 2009-06-14 20:39  
It's understandably not easy for a HIV-positive person, man or woman, straight, gay or bi to be open with even people they are close with, let alone share their stories with the public.
I salute Mr S L Yang for his guts and wish him the very best.
23. 2009-06-14 21:47  
it must be a hard time for you. but life is hopeful.
thanks for your sharing
my best wish to you .
24. 2009-06-14 22:31  
Thanks for sharing a story that is not only brave but brings us to the actuality and truthful moments. I wish you all things well
25. 2009-06-15 10:16  
@Laoshiyan - we should all be scared. Unsafe sex with a stranger is just plain stupid.

Mr Yang - thanks for sharing your story. A timely reminder to those who had forgotten or do not know how it feels to see your friends die around you.
26. 2009-06-15 11:04  
I liked this article and while there are those who look at it as a scare tactic for the upcoming summer break, it's insightful to look at how one individual deals with all of it.

Starting from being tested, and the next episode probably being how he breaks the news to his family.

It is such sharing sessions and stories that perhaps affect people to be more cautious in comparison to simply reading out statistics. And while I'm more of a statistics person, the fact that we're hearing from a 10 year HIV+ survivor is good, especially for those who are extremely sexually active and those currently with HIV.
27. 2009-06-15 22:53  
Thanx for all the feedback. A pity that those who need to read this series of articles the most, probably will NOT. In 2009, however, blind ignorance of the facts, naive trust in a sex partner, too much judgment-impairing alcohol or drugs are NOT acceptable "excuses" for ever-increasing infections in the MSM community. NO GLOVE, NO LOVE! pure and simple.
28. 2009-06-16 20:47  
Yes, full blown AIDS is not a joke.

I've seen them in the hospital - grown men who dropped to 45 kg so tiny you could lift them up easily, 50-cent coin wounds oozing pus all over the body, those who never had the strength to even sit up and get changed. People who cried because they got infected from their partners. In the afternoons at the hospice in Thailand when all my work is done, my favourite activity would be to remove healed scab and dry peeled skin, but they cover from head to toe and there's only so much you can do each day.

Seeing is truly believing.
29. 2009-06-18 09:53  
there are just too much denial in this world. and responsible people who get tested for HIV regularly are often being seen by others as being unsafe...

I kissed and jo with this HIV guy, and i know that he is positive. I refrained from sex and meeting up with any guy after that for 1 month to get myself tested for HIV. During this period, when my regular buddy approached me for sex, i told him about my encounter and he freaked out. He accused me of being unsafe and irresponsible, by having kissing and jerking off with a HIV guy.

He has had multiple sex partner, and assumed that he is negative as he always used protection. People tend to believe that having safe sex is really 100%. He mentioned that unprotected oral sex has only 1% chance and its 1% only because nothing is 100%! I am so frustrated with him and disappointed with his attitude towards HIV, and i believe that there are many people out there like him, believing that with condom, everything is safe and they never ever get tested despite the existence of anonymous testing. $20, 20 minutes, and you have a peace of mind. You are not only responsible for your own health, but for the health of the society.

Ever since that incident, the guy and i never chatted again. I wonder if being honest and responsible pays off in this society, especially being friends with HIV people are being stigmatized. But still, everyone should be open and honest about their status, and go for regular testing.
30. 2009-06-19 09:29  
TELL ME WHY DO WE HAVE TO READ ANOTHER STORY LIKE THIS? JUST ANOTHER SAPPY STORY AND FRANKLY I AM TIRED OF THEM.
31. 2009-06-19 17:35  
Hey, I like this article so much! It should act as a wake-up call for those who haven't tested for STIs. I dread thinking about having anonymous sex with strangers whom I don't know their sero-status. To all, STOP DOING RAW/BAREBACK SEX, for the good of our community and if you care about them. To SL Yang, kudos to you for being open about your status. I appreciate every word you pen and will continue to read the rest without fail. Thank you very much!
32. 2009-06-20 02:57  
asialove2- 30. 2009-06-19 09:29
"TELL ME WHY DO WE HAVE TO READ ANOTHER STORY LIKE THIS? JUST ANOTHER SAPPY STORY AND FRANKLY I AM TIRED OF THEM."

----------------

I fully agree with 2 words in your post, "sappy, tired". And "frankly" (make it 3 words), it most likely applies to your own story instead. zzzz.
Now go wash your mouth & stay in your room ;)
33. 2009-06-28 18:52  
that's just mean asialove2, try to put yourself in other people's shoe to understand how hard people like SL Yang who found out they're HIV+ have to deal with reality everyday, it takes great courage of him to share this story. Think about it.
34. 2009-07-14 14:26  
thank you so much for sharing these rare expirence.
35. 2009-07-19 22:49  
Being HIV poz is a society stigma. I once told a guy who is interested in me about my status, and he just stopped calling me after that.. Sometimes being honest doesnt pay
36. 2009-08-08 16:28  
Interesting to see some people's discontent with these articles. While suggesting its scaremongering and that we should just "chill out" according to one writer, the cases of HIV infections increase daily. Some people believe its just a matter of personal choice as to whether or not a condom should be used during sex. Its not. Its a matter of life and death. You can only look back with regret once you have been infected. Safe practices are essential and there can be no compromise. While I am not HIV positive, one of my very best gay friends is, and I've been there for him durings his highs and his lows. A responsible and professional person, he let go one night while on ecstacy. He wishes he'd been scared into taking no chances.
37. 2009-08-09 11:39  
stay strong! All the best to you, Mr. Yang.
38. 2010-01-25 17:23  
http://www.facebook.com/home.php?#/group.php?gid=259311756133&ref=ts
39. 2010-05-29 19:05  
Thank u for honestly.....keep it strong, Mr. Yang
40. 2010-09-28 13:24  
Be strong! i salute u ! Everybody pls don't discriminate them... They really Love and cares..
41. 2011-01-08 16:41  
I AM AFRAID TO BE TESTED....
42. 2011-06-14 14:52  
People out there, there is no place for innocent in today's World.
What happens if you're positive according to these tests?
a) deny entry on arrival (by the Rep. of Singapore and 12 other countries)
b) deny insurance coverage (from most insurance policies)
c) suffer from immense stress (from the stigma of AIDS)
d) given prescription of Anti-Retroviral drugs (ARV are proven to cause liver failure and are fatal)

Make sure you read this article before you take any "HIV test"
[EVERYBODY REACTS POSITIVE ON THE ELISA TEST FOR HIV]
from Continuum Magazine, (vol 5, no 5, Mid-Winter 1999), 4a Hollybush Place, London E2 9QX
http://www.virusmyth.com/aids/hiv/cjtestfp.htm
Comment #43 was deleted by an administrator on 2012-11-12 12:49
Comment #44 was deleted by an administrator on 2012-11-12 12:49

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