World AIDS Day: What It Means To Me
Posted by Pozziepinoy on 7:04 AM
With Permission to Post.
My Dear Friends,
Today is World AIDS Day. On this day, you will see a lot of people posting messages on FB in support of HIV/AIDS awareness, you will hear a lot of people talking about the importance of staying safe and being protected, and you might even watch some news stories about the growth of HIV/AIDS in the Philippines or wherever it is you are. Since this is a yearly event, it can be quite easy to be jaded or apathetic about the whole thing, and some of you might not even remember that it is World AIDS Day until the whole thing is over. However, this is a very important day for me, and since you are all people who are important to me, I want you all to know why this day means a lot to me so that you’ll give this day importance too.
Before you panic or anything like that, let’s get this part out of the way: Please don’t worry because I’m fine — and I truly, truly mean that. I will explain everything (well, most things anyway) in a bit, but please rest assured that I am OK, I have come to terms with being HIV+, and I receive as much love and support from the people around me as I did before finding out I had HIV. This whole experience has fortunately been, for lack of a better term, positive.
I found out that I had HIV on May 21 earlier this year. Without going into too many details (because the details are anyway posted in numerous entries on this blog), my partner found out that he had HIV and that’s why I got tested. Let’s just say that if he had it, I knew it was impossible for me not to have it as well, so even before I got tested I had a really strong feeling I had it too. Before getting tested, I did a whole lot of research about HIV treatments in the Philippines, support groups and HIV-related statistics, and I did so much research that by the time I actually got tested, my pre-testing questions to the social worker were not the usual “new pozzie” questions about how long I had to live, is there a chance the test could be wrong, and stuff like that. My questions were more like how soon before I start treatment and what PhilHealth requirements do I need to fill out to be entitled to the free meds. I did the best I could to mentally prepare for a “HIV+” result.
Still, no amount of preparation reduces the devastation you feel once you actually see the test results that have come out and said you tested positive for HIV antibodies. It took a while for the news to sink in. I was fine until the day after getting the test results when I finally realized how sick I could be if I didn’t take care of myself, and when I finally realized I had to tell my Mom. Even before becoming HIV+ I would always say that my biggest fear isn’t death but disappointing my Mom. The first time I broke down after finding out I was HIV+ was after I imagined what it would be like to tell my Mom that I was HIV+.
It might be surprising to some of you, but after telling a few close friends about my status, before I even told my family, I actually told my bosses that I had HIV. In fact, I told them on the same day that I got the test results. Now, my bosses aren’t exactly the easiest people to deal with when it comes to work, so I wasn’t expecting any sympathy. I was really only going to tell them so they would understand why I needed to go back to Manila and possibly resign. I could not have been any more wrong about how they were going to react. They were not only very sympathetic, but they went out of their way to tell me they wanted to keep me in their team and would assist in anyway I needed them to. In fact, since the time I told my bosses that I have HIV, my work responsibilities have only increased. I am now in charge of communication training in 6 locations (9 if you include satellite sites), I have 28 trainers reporting up into me, and even though my patience has never been shorter, I’ve also never felt more in control of my job as I do now.
My family took the news well too, all things considered. Yes, I was scared to tell them, but not because I thought they would disown me or anything like that. It’s just that I didn’t want to hurt or disappoint them. As expected, my Mom was hysterical at first, and I joked with a few friends that all the soft skills I ever learned in the BPO industry (handling difficult customers, delivering bad news, handling escalations, providing alternatives, etc.), I had to use when I told my Mom I was HIV+. I am especially proud of the fact that I didn’t cry once when I told my Mom my status. When my Mom finally calmed down, she sobbed quietly and said she wished she was the one who was sick, because she didn’t want to lose me. I hugged her tight and told her everything was going to be fine. I have never loved my Mom more. I am truly blessed to have the family that I have. I wish all my pozzie friends had a family like mine.
For my pozzie friends that are afraid of telling people their status, there’s a moral in this:Never underestimate a person’s capacity to show compassion, and never think that people won’t give you the love or respect you deserve just because you are HIV+. But even if they don’t, it’s still fine. As long as you still love and respect yourself, then that’s all that matters.
I’ve been told that I have extremely good coping skills, which I guess was true even before I had HIV. . Within 3 weeks of finding out I had HIV, I already started helping out new pozzies online through my Twitter Account. I even set up a new Planet Romeo account so I could spread awareness there about HIV prevention and testing. You see, part of the reason I was able to cope so well is because I had the support online of my fellow pozzies. They reassured me that everything would be OK, and as long as I took care of myself things would be manageable. One of my pozzie friends even has a prayers list on his blog of all his pozzie friends that he wants people to pray for. What I love most about the HIV+ community in the Philippines is that everyone genuinely wants to help out, and there really is a sense that we’re all in this fight together.
As individuals, we in the HIV+ community all have our ups and downs. We regularly get stressed out over work, our families, our partners, our meds, and all the same stuff that normal people do. Since most of us are gays, bisexuals or MSMs, as you can imagine the conversations can get wild and raucous. You would think having HIV would have turned us all into celibate, asexual monks, but that’s really not the case. One of the things I admire about my pozzie friends is that most of us are genuinely able to see the bright side of life — most of the time, at least. Like most Filipinos, we don’t mind poking fun at ourselves. We call ourselves “squids” or, in Tagalog, “pusit” (pusit > posit > positive > HIV+). If women have their soul sisters, then we HIV+ guys have our viral brothers.
HIV may be taking away our health, but it will never take away our laughter or our spirit.
So there. Yes friends, it has only been a little over 6 months since I found out. I’m sorry that it has taken me this long to tell you something as important as this. I’m sure you can understand though that clearly this isn’t the kind of thing you should tell someone through text or an FB status, or even through a phone call. I would have told you earlier had we had the time to meet up, but as with most things, life tends to get in the way. There’s nothing wrong with that. It’s just how things are.
So why tell you now? Well, like I said, it’s World AIDS Day. Most people won’t pay enough attention to news until it affects them personally in some way or another. I’m hoping that when you realize you now have a close friend (or another close friend) who has HIV, that you’ll start paying attention to HIV- and AIDS-related news, and the news is frankly quite alarming. To begin with, the Philippines is one of only seven countries in the world that has increasing rates of HIV infection, and those are only the confirmed cases. Consider these numbers from one HIV Activist that I spoke with:
- “They say there are only 10,000 people with HIV in the Philippines. Thailand has 53,000 with HIV with a population of 63,000,000. Vietnam has 280,000 with HIV with a population of 77,000,000. Malaysia has 100,000 with HIV with a population of 24,000,000. Cambodia has 63,000 with HIV with a population of 14,000,000. The Philippines has a population of 98,000,000 so the true number is over 100,000.”
My worry is that he is correct. In all likelihood, the reason why we only have 10,000 reported cases of HIV is because not enough people are getting tested. Please, please, please — implore your sexually active friends to get tested now and to get tested regularly. While I don’t mean to spread prejudice or discrimination, please put a special emphasis on talking with your gay, bi, and MSM friends. The fact remains that in the past few months, more than 80% of newly reported HIV infections were from men having sex with men. This does not mean that there is anything wrong with men having sex with men. It does, however, mean that not enough men are having safe sex with other men.
More than hoping that you won’t have any more friends that test positive for HIV, I’m actually hoping that if you do have friends that have HIV and don’t know it yet, that they get tested and find out for sure so they can get the necessary treatment as soon as possible. If HIV is detected early, treatments can significantly lower viral loads (even to virtually undetectable levels), boost the immune system, and therefore let people live almost as normally as people without HIV. On the other hand, if people don’t find out soon enough, the grim reality is that a lot of people have died from AIDS-related complications without even knowing they had HIV or AIDS to begin with. I have numerous pozzie friends who have lost their partners to HIV/AIDS, and some died of diseases that people without HIV would not have died from.
While on the subject of grim realities, contrary to how my earlier paragraphs may have portrayed living with HIV, I think I should spend some time talking about how it’s not all roses dealing with this disease. A lot of it is scary, painful, and traumatizing. One of my earliest pozzie friends wanted to go back to his home country, the Netherlands, so he could apply for assisted suicide. He couldn’t take being HIV+, and no matter how much we tried to convince him to stay alive, he went ahead and killed himself anyway. Or at least I think he did, since he removed all traces of himself online and stopped replying to my messages.
Another of my pozzie friends, Marvin, was the brightest and bubbliest of all my Twitter friends. I would eagerly anticipate his messages cuz they were always so positive and cheerful, and even though his CD4 count was only 2, he such fun to talk to. He was a prolific writer and visual artist, and wrote on several blogs. He was a self-proclaimed genius, and I truly believe he was. Sadly, in his last few days before he died, he succumbed to AIDS-related dementia and stopped taking his meds. He was only 21 years old when he passed away in August, a few days before my birthday.
One of the scariest parts of dealing with HIV is having to take ARV's or antiretroviral treatments. In the Philippines, you start off by taking a 14-day trial of Nevirapine, one of the drugs provided free by the Global Fund. If you don’t take the meds as you’re supposed to, then this can lead to Steven-Johnson Syndrome — which if not treated right away can lead to death. The meds I’m on now, Lamivudine/Ziduvudine and Efavirenz, have possible side effects ranging from anemia to psychological side effects like clinical depression and psychosis. When I first started Efavirenz, for the first week I couldn’t tell the difference between awake and asleep. That’s how lucid my dreams were. I read somewhere that because of the side effects, Efavirenz is actually sold illegally on the black market in some African countries as a recreational drug. Luckily I don’t experience the side effects as often anymore, although because of the timing of when I take my meds, at work I’ve had to, on occasion, take a conference call or attend a meeting while I was literally high.
As scary as HIV is for me, sometimes it’s even scarier for my family. My Mom lives in constant paranoia that I’m going to get an opportunistic infection. I can’t clear my throat around her without her thinking that I’ve gotten sick. She’s so worried about me that she has developed vertigo, and recently visited a cardiologist to make sure she wasn’t getting sick herself. My Dad has given me only 5 years to live. That’s not too bad actually, considering that when I first told him I had HIV 5 months ago he only gave me 2 years to live. My closest cousin, Ate Baby, said that before I told her that I had HIV, her father who had died over 25 years ago came to her in a dream. In her dream, I was drowning in a pool of mud and her father was shouting at her to pull me out and help me. She didn’t understand the dream until I told her I had HIV. Her father had appeared to her in dreams before, but this was the first time he had ever spoken to her.
Truth be told, I’m actually sick right now. Last week I came down with a bout of herpes zoster, also known as shingles. Before you worry, I’d like to say that it’s quite common for people after they start ARVs, and it might actually be a sign that the meds are working and my immune system is recovering. The crappy part is that I can’t use my HMO anymore, since most HMOs, including mine, don’t cover HIV-related complications. The part I hate the most though is that I can’t hug Pia, my niece who lives with us who I absolutely adore. She’s a rambunctious 4-year old who doesn’t understand why I’m so sick and why she can’t come near me.
Among the other crappy things that I have to deal with now is that even though I love travelling, there are some countries I can’t travel to because of HIV-related travel restrictions. Singapore, sadly, is one of these countries. I can’t travel to a lot of countries in the Middle East as well, especially now that I’m on meds. I can’t travel without my meds, and I’ve read horror stories of how if you pretend that your meds are vitamins, some customs officials will make you take more than one pill in front of them to prove that they really are what you say they are. I can’t risk that. There goes my dream of visiting Bahrain and my childhood home again.
Still, life goes on. As far as I’m concerned, we all have our problems. Mine just happens to get a little bit more media attention than yours — or at least it will on December 1. Even though I have HIV, please don’t call me a victim. I don’t feel helpless at all. I don’t think the term survivor applies as well, because until a cure is discovered I will have to live with HIV for the rest of my life. I’m simply a PLHIV — a person living with HIV.
I thought my life would significantly change after becoming HIV+, and though in a lot of ways it has, for the most part it has pretty much stayed the same. Honestly, there are a lot of days when the only time I remember I have HIV is the three times a day when I have to take my meds. When I first found out I had HIV, I was very melodramatic and teary-eyed. I was planning to create a bucket list of things to do before I die, I was going to write a manifesto of things I have learned for people to remember me by, and I was going to create my last will and testament so that my family would be well taken care of after I was gone. I have written any of that crap, and as life gets more and more back to normal, and as I get better and better, the urgency to write those things is slowly fading away.
What I definitely would still like to do though is to become an HIV+ peer counselor. I kinda do that already with my Twitter account whenever a new pozzie follows me and has questions about how to deal with HIV. I want to make it official though. It’s kind of the reason why I decided to “come out” so to speak as HIV+. Now that more people know, I don’t really have a choice but to help out my fellow HIV+ peeps. All of you will keep me accountable. My long term goal is to travel the country, maybe even the world, spreading the word about HIV-related issues.
Please feel free to forward this to your friends. I am not going to openly share this, especially with my relatives, and in the back of my mind I’m half hoping none of my relatives will ever see this blog post. I don’t think my Mom can handle all the questions from my relatives about me, why I got sick and all of that. However, the pros far outweigh the cons. We seriously need to do a better job of getting the word out about HIV prevention, testing, and treatment. If that means having to deal with people’s judgments about me and what I have, then so be it.
To end, even though I’m hoping we’ll see each other again someday, like I said earlier in this letter, the truth is that life sometimes gets in the way — and that’s OK. In case I never see you again, please accept my apologies for all the shit I ever put you through if there ever was anything. I’m sorry if I ever made you feel bad about anything, and I’m sorry if I can’t remember what it was that I did. Please forgive any of your friends who turn out to be HIV+ as well for whatever it is they did to you, because God knows we can use all the good karma that we can get.
Happy World AIDS Day, my dear friends. And yes, in spite of it all, I am happy.
