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Stay Safe Online (Nov 16)
7 Aug 2009

'Getting over it,' friendship and respect (Part 5)

Friendships and peer support would help a newly-diagnosed person get over the initial challenges of living with HIV but ridding of non-supportive gossip behind your back types would help greatly too, says SL Yang.

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Getting support when you have a major illness is always important for a person. It is more so for HIV-positive people, because of the stigma attached to the disease. It's not easy for people who do not have the disease to understand what a person infected with HIV goes through. It is for this reason that peer support can help a newly-diagnosed person get over the initial challenges of living with HIV.

When I was first diagnosed many years ago, it took me awhile to agree to meet other HIV-positive people in a support group setting. I first had to get over the acceptance of my having the disease, and also getting over the fear of being exposed. And there was also the irrational fear of meeting someone I knew; something I can laugh about now, but it had caused some anxiety then.
 
When I finally agreed to meet other HIV-positive people, it was with a mixture of apprehension and excitement. HIV is such an isolating disease and the very idea that I would be connecting with other positive people made me feel not so alone any more. There were so many questions I wanted to ask, experiences I wanted to share.
 
On meeting the group, I realised one thing - even though we all had the same disease, we were all very different. The group was like a microcosm of Singapore society - there were Chinese-speaking uncles, a Malay woman, blue-collared ah bengs, professionals ­ but somehow we managed to get along and share our experiences with each other. We were all in the same boat and there was a bond we shared and there was real concern for each other and each other's health condition.
 
There was the real danger of getting an Opportunistic Infection as treatment was still not available then, and people's health could deteriorate fast because of this. There were frequent hospital visits made, and many died along the way ­ those were grim times.
 
As infection rates climbed in Singapore, so too did the number of patients. By the mid-1990s, there were enough gay positives who felt they should start their own group. Paddy Chew mooted the idea, along with a few others, as it was felt they wanted to more effectively connect with members. The gay mindset was also quite different from that of straight men ­ and we could not openly talk about sexuality in a mixed setting.
 
So a gay support group for positive men was set up. We even included a transgender and a handful of women because the women numbered too few to have their own group and they also felt safer with us gay men. By then, medications became available, and members of the support group would share their experiences about taking the meds. There was still anger and frustration as not everyone could afford the medication. It was tough; the ones who could afford it felt guilty, while the others who could not felt they were doomed to die early.
 
Thankfully, by the year 2000, generic medication was made available in Thailand. By then, many were going to Thailand to get the medication; and they would share information on getting these cheaper and more affordable medications.
 
Friendships were forged in the support group; and have endured till now. It is also heartening to note that many came out of their shells and became empowered enough to help newer members. I've since stopped going to meetings these past few years now; as the need for it has diminished. I have my own family for support, as well as a network of friends to share my thoughts with.
 
More recently, I've also been able to contact other HIV-positive people through social network groups. The anonymity of the Internet has empowered HIV-positive people to come out in cyberspace. And it's a fairly safe space for them; I've actually chatted with a few and even met some.
 
So what can you do for a friend you know is HIV-positive? Respect them. I've had a few friends who have blabbed about my status to others as if it was a juicy piece of gossip. Needless to say, they've since been discarded. Too many times I've seen the confidentiality of the status of other HIV-positive people being broken.
 
The other one is acceptance. It's good to let them know you still accept them for who they are. But only if you mean it. I've had to deal with so-called friends who tell me they don't want to know about my status. Clearly, they have their own personal issues to deal with; and are not ready to support you. Again, I've cut ties with these sorts of people. It's enough to deal with the disease; I don't need an added burden.
 
Getting HIV, in a way, was good for me in that it helped me realise who were truly supportive of me, who were my real friends. Once you realise your life is on the line, you begin to see things clearer. People also tend to show their true colours when the chips are down. So I've since edited my social circle; and have been the healthier for it. It has allowed me to move forward with my own life. So yes - to those readers who are thinking "get over it" - I have. I know that being HIV-positive is just a part of who I am. My only hope with writing this series of articles is that people can re-look at their attitudes towards HIV. And for those who haven't even thought about it - start thinking.

Reader's Comments

1. 2009-08-07 22:04
I look forward to reading about each part of your personal journey with HIV. Please keep sharing. I look forward to a time when either i. it's no longer a stigma to share your status with your friends or ii. there is a cure.
2. 2009-08-08 01:19
"I look forward to a time when either i. it's no longer a stigma to share your status with your friends or ii. there is a cure. "
I'm not sure how long we'll have to wait till that day but I'm hopeful. Thanks SL Yang for sharing your story! :) Looking forward to the last part.
3. 2009-08-08 05:57
Applauds! For You!
4. 2009-08-08 11:27
you have a considerating brother always warmly push you openly. GREAT!
everyone has his/her own uncertainty/difficulty, each should find a way that one feels comfortable with.
even though HIV+ occupying most of your time by gauging blood levels; take medicine...etc. but do not forget other component in life too.
all the best to you! GA BA TEH
5. 2009-08-08 12:51
I've not posted on any of these threads that have to do with HIV/AIDS, but it's not because I don't care about these issues. In fact, I volunteer in an AIDS service organization, and I'm actually very familiar with much of what SL talks about.

And I do care.

SL, good for you for writing to us.

I first started posting in fridae saying that I've become an SDP supporter because they are so far the only party that supports gay rights. I've now gone further. I contacted them to ask about doing much more.

Besides the legal issues that the SDP is very supportive about, I've raised the issue about HIV/AIDS, including the issue about the criminalization of non-disclosure of HIV status.

To HIV positive Singaporeans - gay, straight, men, women, trans, or children, you have NOT been forgotten.

But this is the issue right now: Despite the SDP's open support for our legal rights, support from LGBT Singaporeans has not been forthcoming. There are either none of us or not enough of us approaching the SDP to make any of our issues a priority. Including the issue of how our community is being disproportionately affected by HIV/AIDS. How are we going to drive our issues if we are not there to begin with?

Gay rights are rights. But support from any quarters - political parties included - are not rights but entitlements. It is not incumbent on anyone to support gay rights and our issues politically if we don't support them back. Political parties win elections based on votes for them; that includes our vote.

It's as simple as that.

While it's all well and good to talk about the stigmatization of HIV+ individuals, we may need to start also talking about the self same stigmatization that we impose on the most politically oppressed Singaporeans amongst us: the opposition parties, and especially the SDP.
Comment edited on 2009-08-08 13:08:05
6. 2009-08-08 12:59
And since it's also National Day, I leave you with this very impressive ND message from the women of the SDP:


http://youtube.com/watch?v=x4vWRgScTaM
7. 2009-08-09 18:59
人体血液里就算有HIV病毒,也不见得一定会致命。我在中国中医大学里念中医学士课程时,曾听过一位治疗爱滋病的医学教授说过,他说如果有强健的免疫系统,有百分之十或更高的比率的HIV病人仍然可以在爱滋病毒重创下复原,并且返回正常生活,尽管他们仍是全现HIV+反应。

许多从爱滋病复原的人并没有产生对爱滋病免疫的基因,他仃是真的病到了垂危关头;但他们并不放弃,决定采取一些有利于启动免疫系统的健康生活方式而得到了痊愈。很多幸存者自费出版了自己的故事,但并没有引起太多的关注,人们总是把爱滋病形容成一种必死无疑的绝症,这是消极的作法。

更令人惊讶的是,某些爱滋病患不只是从生病状态复原,他们甚至还有能力完全消灭血液里的病毒,最著名的例子就是篮球明星Magic Johnson,他还出席了上个月Michael Jackson的葬礼呢。

所以,强烈的信念很重要,没有这种态度、决心及努力,得了爱滋病就会象是被宣判了死刑!

有什么疑问或心声,欢迎你send message给我。Sam祝福你拥有健康的Body & Mind,活出色彩!
8. 2009-08-09 18:59
人体血液里就算有HIV病毒,也不见得一定会致命。我在中国中医大学里念中医学士课程时,曾听过一位治疗爱滋病的医学教授说过,他说如果有强健的免疫系统,有百分之十或更高的比率的HIV病人仍然可以在爱滋病毒重创下复原,并且返回正常生活,尽管他们仍是全现HIV+反应。

许多从爱滋病复原的人并没有产生对爱滋病免疫的基因,他仃是真的病到了垂危关头;但他们并不放弃,决定采取一些有利于启动免疫系统的健康生活方式而得到了痊愈。很多幸存者自费出版了自己的故事,但并没有引起太多的关注,人们总是把爱滋病形容成一种必死无疑的绝症,这是消极的作法。

更令人惊讶的是,某些爱滋病患不只是从生病状态复原,他们甚至还有能力完全消灭血液里的病毒,最著名的例子就是篮球明星Magic Johnson,他还出席了上个月Michael Jackson的葬礼呢。

所以,强烈的信念很重要,没有这种态度、决心及努力,得了爱滋病就会象是被宣判了死刑!

有什么疑问或心声,欢迎你send message给我。Sam祝福你拥有健康的Body & Mind,活出色彩!
Comment #9 was deleted by its author on 2009-08-10 03:35
10. 2009-08-10 03:34
Sams1979:据我了解,在爱之病病毒进入一个阴性者的人体后(如通过伤口或尿道),如果病毒的活跃程度和数量非常低,那么阴性者的免疫系统或许能够将其消灭,不被病毒感染。但是,在一般情形下,一旦接触含有病毒的精子或血液,人体本身的抵御能力并不能够将病毒完全消灭。因此,在接触病毒的72小时内,病毒会战胜免疫系统的侵袭,然后迅速散播,一旦散播到某个程度,则更不可能被灭绝。

如果一个人怀疑自己接触了病毒,应该在接触病毒的72小时的关键时段内就医,医生或通过抗病毒疗程,可能在病毒还未严重散播前将其消灭,避免新接触病毒者受到感染。但是,此种疗程的成功率并非100%。过了这72小时,接触者就很难消灭体内的病毒。他只能够长期服用抗病毒药物,而这种做法最多能够降低病毒的数量,却无法将其灭绝。但是,由于爱之病本身并不是致命的疾病,而是致命疾病的导因,所以如果能够将病菌的数量控制在安全水平,则能够保障人体免疫功能不被严重或完全破坏,避免爱之病病患轻易患上会致命的疾病(如流感和癌症)。简单的说,如果能够通过服药来降低病菌的数量至安全水平,患者很有可能跟平常人一样健康的生活。

至于你提到的抗爱之基因,却又此事,但是这些得天独厚的人士却如凤毛麟角。此外,这些人大多时北欧裔德,亚洲人比较少有这种基因,因此千万不可心存侥幸。

根据临床研究,现有的抗病毒药物确实能够对大部分的病患起到功效。很多长期就医的病患的病毒数量在超过20年后仍然维持在非危险水平。临床的比较也指出,对于大部分患者来说,西医的抗病毒药物比起草本复方更加可靠。中西合并疗法还没有成熟,所以患者最好是不要自作聪明,道听途说的寻求灵丹妙药。如果要保障自己的健康,应该按照西医的吩咐来服药。
11. 2009-08-10 11:32
This kind of reminds me of the musical 'Rent'.

And I also agree with SL Yang about those who insist on blabbing about HIV+ people to others like it was a piece of yummy gossip. It's such a disgusting thing to do.
12. 2009-08-11 05:10
Morning SL,

Glad you have good friends and support group(s)! ... There are good ones in Malaysia too ... agree that confidentiality isnt something most people can handle ... so reveal only what you have to ... to people who need to ... (on a need-to-know basis ?)


this just in! ... Researchers fully decode HIV genome for the first time!

www.popsci.com/scitech/article/2009-08/researchers-fully-decode-hiv-genome


xoxoxox
yong

ps: calling people uncles and ah bengs huh ? so bad! spanks!
13. 2009-08-11 10:38
Percole, surely you do expect gay voters to consider any political party's wider platform than solely on their stance on gay rights yes?

14. 2009-08-20 17:54
Hi I Salute You For compiling these stories and for covering many issues related to this disease>
may god bless you Always.
Jon.

15. 2010-09-06 01:03
there is nothing wrong having a gay with hiv to be your couple...

i had proved it...but we clash already as he cant accept the truth that i accept him as what ever he is...(so sad)

people with hiv also deserve to be love n care...thats what i know...

i love him (my ex) so much...i seriously want to take care about him (eventhough i need to do a lot of preparation before having sex with him), i dont care...because when the love was there...im sure, u will do what ever you can in order to make him happy n get a better life as a human.

i still love him...
16. 2011-02-08 13:39
Thank you so much for sharing your thoughts and feelings , you are a strong human being ..
17. 2011-06-14 15:35
Is HIV really the cause of AIDS? Consider the information available and judge for yourself.

The Great AIDS Debate (1994)
http://www.youtube.com/watch?v=EFljIcFeLHU&feature=related
18. 2011-06-21 21:05
To No.8 Sams1979, you got the point right, many people like to think if you test positive for HIV antibody, you're going to die anyway. I agree with you, this is not a fact, and many people even live in perfect health today after tested for HIV positive as far back as 1985, the major difference for these people is they never take the "life-saving" drugs AZT back in the late 1980s-1990s when their doctor recommended them!
It all started with the "Gay Lifestyle" back in the late 70s and early 80s. If any one of you who think you can do whatever u like (eg. do poppers, having 1000 sex-partner per year, do drugs & lots of drinking) because there are many types of Anti-retroviral drugs to save you, you're DEAD WRONG !
Comment edited on 2011-06-21 21:15:22
Comment #19 was deleted by an administrator on 2012-11-12 12:48

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