The Adventures of POZboySG
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Showing posts tagged Rotation Curation
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Derek’s Story - My Life with HIV as a Polytechnic Student
Hello, I am Derek, 19 this year and in my final year of my course of study at Ngee Ann Polytechnic. I was diagnosed HIV positive in November last year and it was my first ever HIV test. On that day, Actions For AIDS (AFA) was having an anonymous HIV test booth at a local gay bathhouse and I happened to be there at the same time. I’ve always wanted to take a HIV test but due to financial constraints, I shelved the idea aside. Without much hesitation, I proceeded on with the test.
The test kit needed about an hour to generate results, so I left the bathhouse to attend another appointment in the meantime. They provided me with a number to call and check my result. I made the call about an hour later. I was really scared. The fear of hearing that I’m positive. While the phonecall was still waiting to be answered, I was hoping silently inside that it would be a negative result.I remember clearly how the conversation went, and the AFA volunteer asked if I could meet them in person. Those words really got me panicking. The suspense was killing me. It got me thinking, “Why is he asking me to meet him? Is my result really positive?” so I asked, “What’s my result?” and he then replied, “It’s positive.”
I really couldn’t believe what I heard when they broke the news to me, my only reply was, “Orh.” It was a mixture of shock and surprise. That was the only word I could muster.*
I never planned to disclose my status to my family. Unfortunately though, when I was out one night, my parents decided to peer into my bag. They found 3 bottles of my HIV medication and even went to the extent of doing some online research! My father approached me calmly when I went home and asked me about the medication. The first two questions my Dad asked were, “Can it be transmitted through saliva?” and “Can mosquito bites transmit the virus too?” I wouldn’t say that they are fully supportive of my status and I do understand where they are coming from, since they do not have much knowledge about HIV/AIDS. They even wanted to inform my siblings about my HIV. But with me insisted on not letting my siblings know, for fear maybe they would feel very sad. Thankfully, my parents acceded to my request.
Things have changed slightly after my fateful disclosure to my family members. I used to always be informed of dinnertime with family but on one occasion, my family even started having dinner without asking if I wanted to join in, in spite of reaching home a little early. It’s never been the case. Because of the issue, I had a small talk with Dad last week. He claimed that he’s perfectly fine with my status, so I’d assume the person he was talking about is my stepmother (my Dad remarried) who wasn’t really okay with my HIV status and rather worried that I might accidentally transmit the virus to her children.Not too long ago, my parents even forbade me to place my chopsticks in my mouth if I’m sharing dishes with people. My Dad claimed that he had asked people around him and they told him that you can contract HIV through saliva and sharing food. I believe this is the stigma that HIV positive Singaporeans are facing still. And however hard I tried and how many times I have told him that it is a HIV Myth, it just can’t make him understand. I tell you this sad turn of events because I feel very strongly about this issue, and I really hope things will change for the better.
My advice to those who have recently tested positive for HIV is DO NOT ever tell your family members; if you do, be prepared for the worst, things will never be the same again.*
I have the habit of pouring out my grievances and woes to my dearest friends whenever I am unhappy, with the hope of finding solace, support and understanding from them. Indeed, they never disappoint me. My friends are very supportive and always give me encouragement to persevere in life. I feel really blessed to have them as my confidantes.*
I started my HIV anti-retroviral medication about 3 months ago. I was really scared initially whether I would be able to cope with the financial burden as well as the side-effects of the medications. The first week after I started was a little tough. There was this ‘hangover’ feeling that I’d get the next morning which would last all the way until the evening. I must say that I was very lucky to experience minimal side effects.My first line HIV medications are Efavirenz, Tenofovir and Lamivudine. CDC pharmacy prices for these medications are as such:
Efavirenz (SGD $200)
Lamivudine (SGD $200)
Tenofovir (SGD $550)I am thankful to be a recepient of the Medifund and it helps pay for the entire cost of my medications, especially since I am a student. HIV+ young men are usually exempt from National Service responsibilities but I actually made the concious decision to serve my country. The good news is that the government would also help with the subsidies as a serviceman. I am glad to say that I have acclimatised to my medications now, though I now realise the importance of ample rest, especially as a PLHIV.*
If you haven’t been tested, please do so, its bad form to only seek treatment when you start falling very sick and you are realising that something is terribly wrong. Sometimes its difficult to get back into the pink of health. And to people who have tested positive, live life to the fullest - HIV is only a small part of your life.I always tell myself, “No point crying over spilled milk. Life goes on. Dont let HIV control you. You still have your life ahead of you to lead.” Be like me! Obtain a happy-go-lucky spirit. And also, don’t think too much. Whatever problems you are having, if you can, solve it. If you can’t, leave it. Or if you can, do seek help from friends who understand. Don’t be stubborn and keep all your problems to yourself.
If you’re positive, I recommend you to find out more about the support group events that the Communicable Diseases Centre (CDC) organises every few months or so. The safe confines of the support group provides emotional and psychological support for HIV+ participants and you’re able to learn from each other and also be in the warm company of people who will most understand what you are going through. Also, you’d be able to gain a better knowledge of HIV through the events and you get to make new friends too!
If you’re positive, all the more you should be positive! :)
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Bryan’s Story - My Life with HIV as a 30-something
Bryan is a 33 year old Singaporean male who has been living with HIV for the past three years, having tested positive when he was 30 years of age. Prior to this, Bryan has had taken 3 HIV tests and the results were negative each time. He tested positive by using a Oraquick mouth swab rapid-test kit before having sex with his partner, who had actually planned to have unprotected sex with him.
Bryan adds candidly, “Initially, I was really shocked, dumbfounded for about a few minutes. And the next burning question in my mind was that I wondered if he would still proceed to have sex with me after knowing about my positive result (talk about priorities!). Thankfully, we continued but with protection, obviously.” Later on, Bryan then decided to visit a private clinic to make a proper confirmation with a Western Blot blood test.
A working adult who is financially independent and secure, Bryan does not see the need to disclose his HIV status to his family members. “I have no intention to inform my family and I do not see the point in telling, anyway,” he surmises.
Bryan believes that if there really is a pressing need for the family to know, one needs very sound reason for letting them know. If the reason is to derive much needed support, there are other avenues like friends you can trust and counselling, but if these avenues aren’t present, telling your family is the last resort.
He adds, “On the other hand, you should know your family best. If by telling them about your HIV means you’d incur their wrath and be going to raise hell, and create more problems in the family, then don’t bother. There are already lots of issues to deal with without unnecessary added drama.”
Although Bryan’s situation is not unlike many young HIV+ Singaporeans who have chosen to keep mum about their status, especially to family, he feels blessed to have an understanding boyfriend who wasn’t angry or left him alone to fend for himself, and very thankful his boyfriend didn’t just leave him. Bryan has also told two of his cloaest friends about his situation, one of whom is HIV+ himself, and Bryan seeks his friend’s advice with the nitty gritty of HIV. He adds, “I told my friends because I just needed to tell someone. I do not like the idea of keeping this secret and burden to myself.”
Bryan’s HIV antiretroviral medications are Combivir and Efavirenz, and he has been on them since August 2010. CDC prices for these medications are as such:
Combivir - SGD$166.80
Efavirenz - SGD$200
Bryan decided that he needed the best HIV care possible so he decided not to rely on on generic antiretroviral medication from Thailand. He pays for his bloodwork and doctor visits with his own money or his Public Sector card (PS Card), being a civil servant. But there are limitations however, the PS Card has an annual limit of SGD$350 and obviously, the cumulative cost would be many times over. Thankfully, Bryan is able to utilise his Medisave to pay for his medications. He buys his medications every half year, and SGD$1500 gets deducted each time.
Bryan is a private individual who is very discreet about his HIV, and he does not see the need to talk about it with other people other than his boyfriend and two best friends, so he relies on information on HIV/AIDS he can read and learn from at www.thebody.com.
He has a few words of advice to fellow gay Singaporean men to always play safe. Yes, he understands that unprotected sex does feel good (let’s be honest here) but he advises you to have regular check-ups especially if you are considered high-risk. Bryan is glad he was diagnosed early and now has an undetectable Viral Load and CD4 count of 400+. He adds, “I was really surprised that throughout the years, I’d managed to dodge all the STDs and the first I ever got was the (HIV) jackpot.”
Bryan tries to tell himself that HIV is just like cancer; some people get them and are still living life to the fullest, and that it is not the end of the world. The only hassle Bryan finds is that he finds the daily medication regime a little daunting and candidly adds, “I just hate the thought that I will be on medication for the next 10000 years. And of course I now have to have sex with a condom! Which kinda sucks.”
Jokes aside, Bryan says that whatever the future might hold for one who has recently tested positive to never keep the HIV to yourself, as it is ever so important to talk to someone who understands and alleviate that inner torment, be it with a social worker, or a friend. Bryan finally ends with some important words, “Life will still go on, but now, just be careful and take care of your body since now we have lowered immunity. Right now, I can only pray that a cure will be found during my lifetime. Even though I like the idea of dying young (and beautiful) however, I do not want to go in a terrible and suffering state, that won’t look too good. In the meantime, please take care and play safe, you guys!” -
My Life with HIV - a feature story with @SgPozsterBoy
When I first began tweeting as @POZboySG, one of the first friends I made is a fellow Singaporean HIV+ man/boy/dude/dood. Let me introduce you the ever vivacious, & oh-so-hawt @SgPozsterboy! He jokes & calls me his “PR Girl” since I have many more followers on Twitter, so my promotion of his articles always gets propagated faster. I hope with the little promotion from this blogpost, you’d want to follow his tweets & writings as well (mainly because I think he writes so much better than me!). For this story, I shall give him an alias, and that shall be “Vincent.”
Vincent is a 30-year old successful working adult who has had a well-rounded & priveleged education. A well spoken & attractive young man, he is a well known personality in the social circles. Vincent has been living with HIV for the past eight years, having tested positive at the age of 22, when he was still an undergrad in a local university, recalling that he had a gut feeling that had probably been infected because there was a period of time during which he fell very ill. Vincent had numerous oral ulcers (20 or more) & that most probably sealed his suspicion. Prior to this, he had taken a HIV test during his National Service days, and that turned out to be negative.
As with many HIV+ young Singaporeans, Vincent does not see the need to diclose his status to family members, being an independent working man. He urges newly diagnosed PLHIV to be careful about who you tell because it will definitely affect your mental well-being if whoever you tell rejects you or worse still, tells the whole world about it. Vincent adds, “From the start I made up my mind not let as few people know about it as possible. It’s my way of protecting myself. There were many times I felt that I am ready to tell some friend about it because perhaps at the moment of time, I felt that I am ready to let them know. Thankfully, I held back and I am glad I did it because typically afterwards, some of them proved that they were actually not that ready to accept or were not the sort to keep secrets.”
With regards to friends however, Vincent immediately told his 3 best friends right after he was diagnosed. He was very sure that his best friends would accept him even if he were HIV+. With such a strong, loyal bond of friendship, Vincent’s friends even know exactly what to do in the event he gets hospitalised or in the event of his sudden passing. They have been “briefed” of what to do & where to look in his room, for his HIV medications, to help take them away before his family discovers them. He surmises, “I tell people about my status on a ‘need-to-know-basis’. That means that if there is no need for them to know, I won’t tell them.”
Vincent has a few words of advice for readers who have been recently diagnosed with HIV, “If you have the slightest shred of uncertainty as to whether a friend will accept you, I suggest you hold back until you are very sure. The reason why I say this is because you do not want to risk falling into depression because of rejection. Like I said before, take care of your health. Optimism will really go a long way in your fight against this infection. You are not alone in this. If you need help, Action for AIDS has got support groups with for pozzies like us.”
Vincent has been on HIV anti-retroviral medication for the past year, having taken the step to start after telling himself that he would have to start medication when his CD4 count falls around 200 - 350. (Check out his blogpost about this issue HERE)Progress has been excellent - his CD4 count has risen dramatically & at most recent bloodwork, Viral Load was negligible. His medications are Truvada (Tenofovir & Emtricitabine) and Stocrin (Efavirenz), taken as two pills every day. In the United States however, this drug cocktail is sold as a single tablet known as Atripla. Vincent gets his CD4 counts monitored at the Red Cross in Bangkok, Thailand & sees a specialist in Bangkok’s Bumrungrad Hospital. Medications purchased in Bangkok cost approximately SGD$100 a month. This is not exclusive of the cost of flight tickets (approx $350) & accomodation ($350 per trip). He adds, “Typically I buy about 3 to 6 months of meds per time. So that works out to about SGD$300 a mth in total. My condition is relatively stable now so I started buying 6 months supply recently so that would have reduced the monthly cost by a little.”
CDC pharmacy prices in Singapore for these medications are as such: Efavirenz (SGD $200) Tenofovir (SGD $550).
To help cope help cope & make sense of his medical condition, Vincent reads the two most informative HIV/AIDS resource websites on the Internet, namely www.thebody.com & www.aidsmap.com. He also writes & chronicles his experiences as a HIV+ gay Singaporean man on his blog, http://sgpozsterboy.blogspot.sg/. Vincent enthuses that he had wanted to start the blog long ago after seeing a lot of people around him getting infected by HIV & feeling so helpless & scared. He then some reflection & wondered why he didn’t feel as scared or helpless, & arrived at this conclusion: knowledge. He adds, “I knew exactly how it would pan out and I prepared myself for the eventuality, and knowing to a certain extent what’s to come takes away the uncertainly in the equation. When the uncertainly is removed, people tend to be more optimistic.”
Vincent hopes that by writing, he would be able to remove some of these uncertainties for people who are like himself & let them know that there is life after your HIV infection. He does however, feel guilty that he’s not able to write more because of his busy work schedule. He quips, “When I write, I purposely write in a way that is completely different from what I do normally to prevent readers from identifying me. This rather tedious but necessary for without which, I may not have the guts to write at all. I finally got inspired to start the blog and twitter account after reading @POZboySG’s tweets. I knew I had something to contribute to the community and since I could, I should.”
Before we end this story, Vincent has a few words of advice to our readers, especially those who are in limbo after testing positive for HIV, or are still in a conundrum whether to get tested or not, “Knowing my status took away all sleepless nights in denial. It gave me ample time to prepare and plan for what is to come. I am thankful that I faced up to the music and because I did that, I did not end up having to fight for my life in the ICU like many of the people around me did because they were in denial. Another important point is that this also gave me control over who I want to inform about my status. Had I chosen to be in denial and eventually end up in the ICU, more people would have known about my status. So waste no time, know your status, be responsible, go get tested.”
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Janice's Story - My Life with a HIV+ Family Member
One evening 6 years ago, my husband & I were having dinner with my Mother-in-Law when my husband suddenly said he had something to tell me. I was heavily pregnant with my eldest son at that time. I was curious & really keen to find out what was the surprise about. As we are from a middle-income family, the first candid thought that came to my mind was, “Did he strike lottery?”
I remember vividly that was a 9pm drama serial on Channel 8 that has a character played by actress Belinda Lee & this character was diagnosed with HIV. Why this sudden mention was because my husband then told me that his Mother has the same illness as the TV character. I was in a total state of shock, definitely! My Mother-in-Law then asked me if I did the prerequisite pregnancy HIV test. After coming to terms with the shocking news, I bit my tongue and replied (at that time, I did not have a close relationship with her) saying I was “okay” - I had tested negative. She was glad & continued to have her dinner.
The dinner on that night was my most emotional ever. I had finally understood why my Mother-in-Law hated her husband so so much. I always found my Mother-in-Law to be the stereotypical spiteful Cantonese woman who dislikes Hokkiens like myself. She was, and still is, always the traditional Chinese woman who’s lived through the decades & a world war, thinking she knows everything about the world just by watching the news. And what I hate the most was that she ALWAYS loved to brag to me about how fantastic her only child was. Like hello.. I married your son for love & this definitely wasn’t an arranged one, okay? And also I really hated her for a while because she promised me that she would help take care of my eldest son after he was born, but didn’t. I always have a million & one complaints about her. Such is the love-hate relationship between a Daughter-in-Law & her Mother-in-Law. ;)
But when we scratch the surface, my Mother-in-Law is a actually demure lady who has had no education, coming from a big family. It was not uncommon for girls born in 1940s Singapore to be uneducated. Marriages were also arranged & hers was of course, the same. Having occasional small talk over the dinner table, she would often reminisce about how great life was back in the kampung days. But every time if we were to talk about her marriage or husband, she would fly into a rage & say that her late husband was a bastard (she would say that in Cantonese). Of course every time she said that, I would roll my eyes in disgust & only think to myself, “Then WHY did you marry him?!” Ever since the HIV disclosure has come to light, I now live with my Mother-in-Law more amiably as I can now finally understand why she is always so sensitive over the topic of money, or why she is so particular about cleanliness in the house - especially when it comes to handling wounds & things like that.
She then also told us about how she got infected with HIV via her late husband, having always known that her husband was a philanderer. She also further explained why she did not (and of course could not!) have another child after having her only son (now my husband), even if she wanted to, as that would be very selfish to the child. It is not an easy route I would say but since we have a family member who needs extra care from us. We now try to spend more time with her, have family meals together. Sometimes we even joke about how she can actually work even with the HIV. But of course, its just in jest as we really don’t want her to over strain herself especially since she’s already 65 years old - a Senior Citizen.
My Mother-in-Law stopped working since her husband passed away in 1997 & depends solely on her life savings for her HIV medications. Her latest “income” came from selling her HDB flat in 2005 before moving in with my husband & myself. I also believe that the money made from the sale of the flat helps fund her medications. My husband does give her an allowance every month & I believe it does help with her expenses to live comfortably. On a personal level, I will always try to read more about my Mother-in-Law’s medical condition & try to understand her more through banter at the dinnertable. Small talk like these might mean nothing to many people I know, but I know deep down inside, it really means alot to her.
Recently she’s talked to me about death again. It is such a contradictory topic here I know. As much as there is a love-hate relationship with her & I sometimes dislike staying with her & enduring her odd habits & quirks, but I pray God will let her stay on for more years with us because I know these support & love from us would ultimately be the best for her. Thank you for giving me a chance to share my personal story with you, and how I live with a family member who is HIV+. :)
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J’s Story - My Life with HIV as an NSman
J (Twitter account @tastylongwiener) is a 22 year old young Singaporean living with HIV. He is currently serving his National Service as a soldier in the Singapore Armed Forces. J is one of the first friends I met who was HIV+, about two years ago, and we have been friends ever since, I’ve even met his parents for dinner, and they are the most warmest and accepting family I know. A well-spoken and very intelligent young man, I enjoy my company with him especially at dinner parties and the occasional club-hopping where we totally let our hair down and par-tay!
What motivated J to first take a HIV test was when his body started exhibiting HIV symptoms like rashes, fever, flu and oral candidiasis (thrush). He had taken the test a year earlier during World AIDS Day with a mouth-swab test kit and tested negative.
J adds, “my first HIV test (mouth-swab) actually emboldened me. I felt invincible, years of indiscriminate unprotected sex, and negative, not even a single STD had infected me. My daring attitude was put in it’s place after symptoms of HIV manifested. I felt small, belittled and anything but invincible.”
Enviable to most other young Singaporeans who have to face the daunting task of going to get tested alone, J’s mother and his best friend were in cahoots, having planned for days to bring him to the DSC Clinic to get tested. His entire family now knows of his HIV status and they try to understand his situation, although there are many aspects they still don’t quite understand, or simply choose not to.
J has a fee words of advice to newly diagnosed HIV+ people with regards to disclosure to family, “Take it one day at a time. Come out when you are ready, if given the choice. Nothing that you don’t wan’t to change has to change (asides from your sexual habits) if you don’t want it to. Family can be the best support system or the worst critics, you know your own family best and their personal convictions - you should know best if and when to reveal your diagnosis to them.”
He also urges newly-diagnosed PLHIV to, “reach out and make connections with NGOs for support before you do your family. Seek counselling from peers before family. I would honestly put family among the last people to reveal your condition to, because the possible rejection from within your own home when you’re battling your own demons could just crush you.”
On the issue of disclosing your HIV positive status to friends, J explains, “Many will be sad for you, shocked and in sympathy. That can be a good way to get you up for feet, but once you’re up, you have to remind them that you are not looking for pity. You’re still the person you were before your diagnosis, and they shouldn’t need to treat you any less.”
J has a few BFFs who now know of his condition and understand and give their buddy whatever support he needs, if need be, but J also interjects, “That said, not everyone will be sympathetic. To this day, there are people who might hold the ‘you deserve it’ stance. Choose who you reveal your condition to carefully. I had a friend who was worried that I had passed it to her because we would always share drinks and food, but it’s understandable. They fear the unknown, as do most. Explain, educate, and make known what is unknown to eradicate this fear.”
J is currently on HIV anti retroviral medication to keep the disease in check, namely First Line medications, Truvada and Efavirenz. Before enlisting for NS he used to get his medication from runners who purchase generic medication from Thailand/India at the fluctuating cost of around SGD $200-$220. He has also gone to Thailand to purchase medications himself at the cost of SGD $130-$150 (non-inclusive of airfare). He is not a recipient of the government assisted MediFund scheme.
Truvada is not approved in Singapore and is next to impossible to obtain. Pharmacy alternatives in this country are Lamivudine & Tenofovir.
CDC pharmacy prices for these medications are as such:
Efavirenz (SGD $200)
Lamivudine (SGD $200)
Tenofovir (SGD $550)We now come to the issue of J serving his National Service with the Singapore Armed Forces. I have nothing but praise and admiration of the higheat degree because as HIV+ men are automatically exempt from NS duties; or when their status is found out during their tour of duty, they will be discharged and be given a PES F, like in my own case. He is an inspiration to me for that he exhibits the desire and patriotism for Singapore, to serve his nation EVEN when circumstance has already exempted him from such an important responsibility.
J now obtains non-generic HIV medications straight from the pharmacy, and is covered under SAF’s medical coverage, where they pay for a serviceman’s essential medication/check-ups, including the above-mentioned $950/month drug combo. He also adds, “I have nothing but praise for SAF policy to allow a pre-enlistee to serve despite knowing his diagnosis if he so wishes, despite knowing the costlier medical coverage such an enlistee would bear. I had not known this to be the case prior to enlisting, and upon being advised by medical officers, found out that the SAF would bear my ARV costs through my NS term has been the best news I’ve heard in a long while.”
There are a few online publications that J reads to help cope & make sense of his medical condition, namely http://www.thebody.com, http://www.positivelite.com and www.silencesg.org, a local youth STD awareness campaign he started which had its run in 2011.
J has a belief that writing is the best outlet for one’s emotions, and it keeps you sane and he has his own blog (www.tastylongwiener.wordpress.com), where he chronicles life as a HIV+ person. It is the one thing that simply listens without prejudice - that is until you open up for external readers to comment and interact with you - fortunately, most of whom, you’d find are rather supportive, and garner much needed support from.
Before I end this rather long epic saga-like story, J would like to end it with a few words of advice to newly diagnose PLHIV, especially those in limbo after a positive result, “Always remember, you’re not the first, so learn from your predecessors on how they are coping. Keep an open mind and empower yourself with knowledge, and in the future, use this to in turn, empower others who will come after you. We are a community, and if we don’t stand up and alongside one another, then no one will. At times you might feel forgotten, living with a disease that many are not willing to speak about. It is up to you to change that. Be the voice you never heard, and speak out. Your fear will only drive that of others, whom you will need to remind - there is nothing to fear but fear itself.”
Thank you for taking the time reading J’s story and I hope you have gained more insight of the life of another HIV+ Singaporean with his own story to tell.
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Juan’s Story - My Life with HIV
Juan’s story
He sat me down in the cold room, looked at me, before letting out a sigh and said: “You do know what this is for right?”
And at the back of my mind, something in me knew did not want to hear the answer, yet I knew I was resigned to my fate.
“You’ve tested positive.”
***
Hi, my name is Juan (not my real name); I am turning 22 this year, and this is my story.
Just barely two months ago, the term HIV didn’t strike me as something personal. To me, it felt like, “something someone else would get, and I wouldn’t get it.” I guess it’s the feeling of being young, of feeling invincible.
But all that soon changed.
It was the routine pre-ORD check all full-time national servicemen need to go through. One of the tests done was the HIV blood test. Now being the clueless kid I was, I didn’t know what the blood test entailed. I had heard rumors of it being a HIV check; some said it was a check for other ailments. Nonetheless I underwent the check, thinking, of course, nothing would go wrong in this minor formality.
Then came the phone call on afternoon. “The MO needs to see you urgently.”
At the point in time, I didn’t know what to think. Perhaps something was wrong with me, or perhaps they lost my blood sample.
Or perhaps I had HIV.
*
The day came for me to receive the news at the medical centre. I was worried as anything, and when it came to me, it hit me like a truck at full-speed. I just fell silent, and sighed.
What I felt was strange on the day was how I didn’t want to think about how I got it, but rather, what should go on from this juncture.
Then came the dilemma of disclosure which buzzed in my head for the whole period of time I was at the medical centre. I didn’t know if I should disclose my status to my Mother, who was my only other family member (Dad left when I was really young). It ached me to think about the hurt I would cause by telling Mother.
But it was something the MO (Medical Officer) said that made me take the next step.
“I would tell her, because she is my only source of strength.”
*
That night came disclosure and a lot of hurt. I wound up telling my mom about everything, and instead of tears and all, she turned out to be surprisingly stoic about it. I was the extreme opposite - a blubbering mess of tears and emotions.
What she did say the next morning made me feel even sadder though. “I couldn’t sleep, I couldn’t do anything in the night,” she said.
I guess by telling her about my HIV did hurt her (after all to see your only child go through this and face stigma will be painful), but I am glad I told her because I would implode if I didn’t. I felt better after discloing because I didn’t need to feel like I was hiding things. She did tell me her greatest fear for me after knowing was not so much my health, but for my future, because I guess she knows the stigma and hurdles PLHIV need to go through.
*
Things got better (they always do I believe) after my initial visit to CDC (Communicable Diseases Centre), where the doctors and medical social workers reassured my Mom that everything would be fine.
I guess she really heaved a sigh of relief when she knew my initial CD4 count was above average - 513. :) It also helped that I did not need to start on medications this time around, although my doctor has been egging me on to get started.
Apart from my Mom, I have two other friends who know about this. The first is a close male friend, also gay, who stayed by me throughout the period of time I was awaiting my test results in camp. He was the first friend to know of my diagnosis, and I was genuinely touched by his concern.
The second is my best gall, who I came out to in Polytechnic. It was weird disclosing to her, because by then, I had undergone sessions at CDC, and my life was slowly regaining its normality. But I guess because she was the first person I really came out to, so I felt compelled to let her know, as a friend. She was shocked to know, because like me, she thought we were infallible; we were indestructible. I’m glad I told her, because now we talk more openly, like how we used to.
*
Looking back on my journey with HIV, I would have to say that I am blessed to have a relatively fuss-free path. That’s not to say that my path has been smooth though. I am thankful for the support from my mom and my two close friends. That, and the new HIV positive friends I made at one support group session. I think it’s good to know that there are people who are just like you - young, with goals and dreams - who are with HIV too. It’s interesting to see how people cope differently, and definitely I am learning about coping with medication from them, when the time for me to start my medications comes.
I think one important mantra to adopt when you discover you are diagnosed with HIV is to not take the reproachful approach, but rather, take the proactive approach. I feel that one should not question the “why?” (as in “Why did I end up with this?” and so on) but rather question the “What’s next?”. For me, taking this approach made me re-assess my goals (I gave up and withdrew from an award I fought hard for) and made me sit up and take stock of what I want to do.
I think being forward looking helps. It is no point harping on who might have infected you, or why you got this - one needs to take control of life from this point on. Someone in my support group said that, “This is a new chapter of your life; you need to write the chapters of your life.”
For those that worry about disclosure to their parents, I urge them to reconsider. I disclosed because I know our relationship, and the fact we draw strength form one another. It also pays to remember one line my mom told me after disclosing to her, “No matter what happens, you are still my son, and I will journey with you on this road.” It is a bittersweet line that is exceptionally poignant, and it is worth recalling for those who worry about repercussions.
Also, it is worth remembering that not everyone needs to know about your status. Share it with those who need to know, and those who really care. Granted, sometimes relationships may falter, but those that stay on will only emerge stronger. :)
For those that worry about the future too much like I do sometimes, sometimes it’s okay to just stop and take in the now, and be thankful for the things you have. The feeling of being thankful helps one to move along in life. If you fear things, and if you fear your illness, this can only mean that the illness has won half the battle. Remember, you have not fallen down and you will be the person you always are.
You must also remember that you are not alone in this, and if you need help, help is always available! (I can help listen too, if you want!)
*
And so my journey with HIV has only just begun; I know that this will be a long journey, lasting my whole life. It won’t be smooth, neither do I hope it be very rocky., but this is what is willed to me. :)
Like the saying goes - “This is the new normal.”
To many great things in life,
Juan :)
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Lek’s Story - Life with HIV in My 40s.
Lek is currently a 47 year old Singaporean man working in the service and hospitality industry. I have known him from Twitter when he revealed his HIV+ status to me so this time round, I would not be revealing his identity for obvious reasons. He seldom tweets alot but I do know he reads the tweets of people he follows owing to the frequency of his tweet-favouriting. :)
Lek has been living with HIV since his diagnosis 8 years ago when he was 39. According to him, it was a routine blood test as he has regularly done so in the past, to know his status. Lek also adds although he regularly tests himself, the fear and embarassment of bumping into the people he has had sexual relations with in the past is always present.
Even after testing positive for HIV almost 10 years ago, Lek lived his life without HIV medication only until he was hospitalized 4 years ago for Pneumocystis carinii Pneumonia (PCP), a HIV-related opportunistic infection. To date, no one in his family knows of his condition and he adds, “I don’t think my mom can take it if she knew about my HIV. Although I was hospitalized for about 15 days, to her, my mom stills thinks its just plain Pneumonia.” With regards to disclosure of one’s HIV status to family members, Lek advises that it’s up to the individual whether to review it to your family and also how supportive your family is, or how they will accept your condition, so it will be up to the individual’s discretion.
Lek is not unlike many of us HIV positive Singaporeans who have chosen to keep mum about their status, even to close friends. He adds, “even if I were to leave this world. I will leave without people knowing, unless I have friends who are in the same boat as me, we can share our troubles and hopes, and support each other.”
As mentioned earlier, Lek has been on first line HIV anti-retroviral medication since his brush with mortality with PCP. He is currently on Tenofovir, Lamivudine and Efavirenz. CDC pharmacy prices for these medications are as such: Efavirenz (SGD $200) Lamivudine (SGD $200) Tenofovir (SGD $550).As a working adult, he mentions that since his MediSave account has been relatively untouched over the years of accumulation, he utilises the CPF reserves for his monthly medication, which is capped at $425.20/month. He also adds, “I have to support my own medical bills and medication is not cheap at all, lucky I have enough Medisave in my account that’s why I opt to use it to pay for my medication.”
Before ending his interview, Lek would like to leave the readers some words of advice, especially to younger Singaporeans and those who are currently in a state of limbo after testing positive, “If you have not get yourself tested especially if you are a very (sexually) active person, I suggest you get yourself tested as soon as possible; don’t wait until its too late! And if you have tested positive, keep yourself healthy as far as possible because light cough or fever will do you no good.”
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Kevin’s Story - My Life with HIV
Kevin is a 25-year old young man who has just recently graduated from university. A well-rounded individual, Kevin has always been a straight ‘A’ student and attended some of the top schools in Singapore, in addition to his dedicated involvement to his tennis training. A well-educated and a fine-looking young man, he is always the life of any party he attends.
It has been almost one year since Kevin tested positive. Having had gone for HIV tests before, albeit anonymously, they were always without a thought or worry. For that particular fated anonymous test, of which Kevin tested positive, he had engaged in unprotected sexual intercourse with someone he met online, and he added, “I simply had a gut feeling that something was amiss.” Kevin then continues, “When the counsellor told me the ‘basic’ test showed I was positive, I’d expected it. There wasn’t much denial or fierce rejection of the idea, though I must admit I was a bit dismayed that my hopes of being ‘Negative’ didn’t pull through. I simply resigned to the fact that I was positive - even the counsellor felt that I took it very well.”
Kevin, as with many other HIV-positive, young university-going Singaporeans, are living their lives with HIV in total secrecy. Kevin has chosen not to inform his family and tried his very best to keep his diagnosis hush-hush. As I tell you his story, Kevin is not planning to tell his parents anytime in the near future, unless societal norms and circumstances change for the better. Kevin adds his thoughts with regards to disclosing one’s HIV status to family members, “I would actually say, ‘Don’t tell anyone if possible’. In a society like Singapore, living with HIV/AIDS has such a heavy stigma—that it is sometimes a burden even to yourself—so the lesser people who are in the know, the better. Call me cynical, but you can never be too sure how your status can be used against you. And if you want to tell your parents, you have to be prepared for the worst; they may turn their backs on you, and destroying that basic family unit of care and support isn’t going to do any newly diagnosed HIV+ person well.”
Kevin however, has chosen to tell just one friend about his condition, me, because I am HIV-positive as well and he felt he could count on me - isn’t he such a sweet boy!?. While Kevin is still strongly against telling people one’s (positive) status, there are a few ‘positive but anonymous’ people out there who are willing to lend a helping hand, or listening ear, should you need it, be it directly or via a created anonymous persona.
For a newly diagnosed PLHIV, Kevin still has quite a considerably high CD4* count of 577 and is currently not required to be on HIV antiretroviral therapy drug regimens yet. To keep healthy and fit, he immerses himself with weight training at the gym in addition to his tennis activities. Kevin takes health supplements such as Vitamin B complex and Selenium tablets to keep his CD4 level in check. Being quite an image-concious, vivacious young man that he is, Kevin also watches what he eats very strictly.
He worries about starting medications though, mostly about the side-effects and financial burden it may have on himself since he is just starting to join the workforce. “For that period—after my unprotected encounter—I was simply distracted because I was unclear of my status, i.e. my state of health.” Kevin advises his readers, especially those are out who are afraid or worried about a ‘positive’ outcome to overcome that fear and get tested. At least you’ll have a confirmation, remember, the HIV testing window period applies, and you are able to plan ahead on how to maintain, or improve, your current state of health. And most importantly, Kevin believes that at least you have the choice of doing the ‘right’ thing to your partner, should you have one i.e. by protecting him/her.
Before ending his personal story, Kevin adds, “To those who are newly positive: live life like you’re ‘negative’. Being positive doesn’t change who you are; people living with HIV are still human too. Do not reject yourself, or the illness—for if you cannot accept yourself, how will you expect others to accept you? And I hope you may one day find someone can love and accept you wholly.”
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I’m gonna be a Twitter curator for a Singapore-based #RotationCuration project in two hours! Watch this space at www.twitter.com/@hellofrmsg.
Here’s my short introduction, which can also be found at http://hellofromsg.tumblr.com too.
“Hello! You may call me Zack. This week is slightly different, for I shall be an anonymous tweeter for @hellofrmsg. I am 24 years of age, turning 25 in three months actually, and I live in Upper Bukit Timah. That’s in Western Singapore, and I have real monkeys for neighbours (I’m serious!). Am a true blue Singaporean who code-switches frequently in between speaking in Received Pronunciation and the thickest ever Singlish possible. I’ve just graduated and am just starting life as a (somewhat frazzled) working adult. I shall not delve much into the details since that would be a wee bit detrimental to my real life identity. :) Oh, and I usually tweet as @POZboySG on Twitter.I have been living with HIV for the past four years now. I was diagnosed HIV positive during my National Service and the past four years have been quite an emotional and psychological rollercoaster for me (I’ll tell you more during my tweetspams in the coming week). But hey, at least I am still running about and looking at life with much positivity (excuse the pun) and great hope!
So far, the past few tweeters have been nothing short of Ab Fab amazing with their tweets so I need to level up and at least do a week’s worth of presentation up to standard. So, I have thought of an “It Gets Better” personal project which will focus on the HIV/AIDS issue in Singapore. My focus will be on PLHIV (People Living with HIV) living in Singapore and I want to tell their story through my blogposts at my Tumblr blog www.pozboysg.tumblr.com.
With the opportunity for me to curate the project, I feel that its a very good platform for us HIV positive Singaporeans to tell our kaleidescope of personal stories and create an awareness to the general populace in the hope that we can lessen the stigma attached to PLHIV as well as HIV/AIDS in the Singapore society.
I thank you for taking the time to read through my little introduction and I hope you will have a blast and a laugh or two walking through my curation journey for the coming week together with me. And I do hope by the end of the week, your preconceived prejudices and notions of HIV positive people will change for the better. We are faceless, but we are not silent. We are people, Singaporeans, just like you.
Godspeed and much love,
POZboySGP.S. You may ask me anything here on my Formspring account too! http://www.formspring.me/POZboySG”
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