This is part of “More than a Number”, which Outrage Magazine launched on March 1, 2013 to give a human face to those infected and affected by the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the Philippines, what it considers as “an attempt to tell the stories of those whose lives have been touched by HIV and AIDS”. More information about (or – for that matter – to be included in) “More than a Number”, email email@example.com, or call (+63) 9287854244 and (+63) 9157972229.
(THIS IS PART OF A SERIES, WITH THE STORY OF PAOLO SHARED IN PARTS – ED)
He was standing on the balcony of one of the coffee shops in Tomas Morato, puffing his cigarette before he spotted, and then waved at me.
“Hi, I’m Paolo, patient H42007XXX*,” he said to me when we were face to face, introducing himself as he reached for my hand.
Several weeks back, I received an email from an unfamiliar sender, asking if I wanted to write about the “real deal of being a PLHIV in the Philippines”. Having written about the issues facing the HIV community in the Philippines, including the ARV stockout, this was not exactly uncommon. Outrage Magazine also has a campaign – “More than a number” – that aims to give a human face to those affected by HIV. But the following day, the same sender sent another email; and this time, it seemed more… convincing.
Dear Mr. Pascual,
I came across your contact details while browsing Outrage Magazine.
I am reaching out to you for an interview. I want to give firsthand details and experiences on what it’s like to be a PLHIV. I want to share my perspective. We can set a meeting so you can listen to my story.
Don’t get me wrong, I’m not asking anything in return, I just want to share what I know and what I have been to in the last eight years; probably, to help and inspire other PLHIVs and to educate members of the LGBT community.
Hoping for your favorable reply.
“I remember the time when I found out that I am HIV-positive. It was the summer of 2007. My friends and I usually get ourselves tested every six months because of the kind of lifestyle we were practicing,” Paolo recalled.
Before being diagnosed, he spent most of his nights in different LGBT places in the metro, including clubs and bathhouses. He admitted to partying, drinking, and taking recreational drugs like there was no tomorrow.
He did go to “San Lazaro to register and submit my test results. I felt that it was the right thing to do,” he said. Paolo also admitted his status to his closest friends, even if kept it from his family.
Even after he tested positive, Paolo’s lifestyle remained as wild as usual. “I was out every night. Because whenever I’m sober, when I’m alone and the surrounding is quiet, that’s when depression kicks in. Yes, I’m okay. Yes, I already accepted my status. But, things are not that easy. I always need a distraction to take my mind off things,” Paolo said.
After his few initial visits to the treatment hub, he stopped going for four years and only returned in early 2011, when one of his friends also tested positive and asked for his help.
“My CD4 count at that time (in 2007) was 582; it was high enough. But when I went back to the hospital in 2011, it was already 327. I was really worried,” Paolo said.
When his CD4 count reached that level, he was advised by the doctors to start taking antiretroviral medications.
Paolo was willing to start the trial period of the treatment, but one of the hub’s policies at that time was for a patient to have a treatment partner before they allow and give them the medicines.
“I have no one to ask,” Paolo said.
He was living on his own that time.
“And although my friends knew my status, I didn’t want them to go through the endeavor I was going through,” he recalled.
So he convinced the doctors to allow him to start the treatment on his own and assured them that he would comply with all the requirements of the hub. Paolo was made to sign a waiver, indicating that whatever happened to him, the treatment hub or attending doctors will not be held liable.
“I was given two weeks’ worth of Lamivudine/Zidovudine and Nevirapine. The doctors also gave me a list of allergy-causing food and was asked to avoid them for three months,” Paolo said.
During the first few days of intake, Paolo started feeling pain and was feverish.
“The doctors explained the possible initial side effects of the ARVs; but to actually feel it first hand, it was like hell. Two days in, my whole body was in pain. My fever was rising every day. I wasn’t allowed to take Paracetamol. I wanted to stop taking the medications, but I know it wouldn’t do any good,” Paolo said.
He lost almost 30 lbs after one week. His fever played from 39°C to 43°C, and patches of red marks also started to appear in different parts of his body.
“I was very weak. I called the treatment hub and told them about my condition. I was asked not to stop taking the ARV meds and finish the two-week trial. But before I was able to reach the 14th day, I was experiencing unbearable headaches and muscle pain, it felt like I was going to die,” he said.
The first thing the following day, he went to the hub and waited for the doctor.
He was injected with a high dose of Iterax.
“That morning, the antihistamine that was given to me was really strong. I took the train on my way home. It was really difficult. It was a mix of headache, nausea, and muscle pain,” Paolo recalled.
After one week, he was asked to go back to the hub. He was given another set of ARVs.
“Good thing they shifted my medication to Efavirenz. Even if I feel groggy every time I take it, it’s more tolerable than Nevirapine,” he added.
“I remember when I lost weight and when red patches started to appear on my skin, I felt so low. I couldn’t see myself anymore. I wore a jacket all the time so people would not see how ugly I WAS becoming,” Paolo said.
He was also making every possible effort to act and look normal at work, even if it was close to impossible.
“In the office, I was always blank and not functioning normally. Some of my officemates even started teasing me when they noticed the red patches on my skin. I felt really down, I almost felt suicidal,” he said.
Though his friends communicated with him everyday to check his condition, for Paolo, it was not enough.
“Even if I have friends who were there for me, the feeling was so impalpable. It was unexplainable. No one can really gauge what PLHIVs feel except themselves. At the end of the day, after you separate with the people who listen to you, the depressions would start to kick in. And every time I’m alone in my room, that’s when the tears start to fall – not because I have HIV, but the struggle I experience everyday in dealing with this,” Paolo shared.
He also joined different organizations that cater to the needs and welfare of PLHIV, but that didn’t help him either.
“Those support groups, yes, they’re doing a superb job, no doubt about that. But in reality, it’s not them who can and will help you because they don’t really know what you’re feeling, HIV is really a personal thing. Support groups… I have been involved with three of them, and they have not really offered enough support particularly when you’re experiencing a chronic type of depression. Sometimes, crying all by yourself while you’re drunk is better than repeating your story over and over again to a group of people,” Paolo ended.
*EXACT PATIENT CODE WAS REMOVED AS REQUESTED BY THE INTERVIEWEE TO PROTECT HIS PRIVACY