Growing old with HIV in Malaysia
Andrew Tan from Malaysia, was diagnosed with HIV in 1994. He was 34 years-old at that time and didn’t expect to live beyond his thirties. Today he is 55 years-old and open about his status and being a gay man. As another World AIDS Day is marked, UNAIDS speaks with Mr Tan about his many personal struggles and triumphs which in many ways have mirrored the wider developments taking place in the response to HIV.
UNAIDS: When did you realize your sexual orientation?
Andrew Tan: When I was in school, we lacked information. My parents never talked about sex and our teachers would skip the entire chapter on sex because they felt so awkward talking about it. I didn’t even know that there was such a thing as ‘gay’. I knew that there was something different about me, but I never had a word for it. I was always the quiet, studious guy who would spend recess time eating and talking instead of playing in the fields like the other boys. I felt an attraction to my father’s male friends. Slowly in school as a result of being bullied with names like ‘sissy’ ‘ homo’ etc I realized that I was in fact gay.
UNAIDS: What was it like growing up gay at the time?
Andrew Tan: I went on to pursue my education overseas. There was a point in time where I forced myself to be ‘normal’ and fall in love with a woman. There was this girl who really adored me and I thought it would be nice to get married and have children. But there was some part of me that knew I could not be faithful to her, the fear of me destroying her life stopped me. I told myself that if I was gay, I was gay. If I didn’t accept myself, how was anyone else going to accept me?
When I came back to Malaysia, I started working, gained some independence and some disposable income. I began going out and meeting new people and partying in the only gay club in KL. It was common to meet someone you liked at such places. Remember that at the time we gay people knew that our relationships were not going to be accepted by society and usually we grabbed at every chance of getting any affection.
UNAIDS: Did you have meaningful relationships with other men?
Andrew Tan: I once met a guy at work. We were sent on a business trip to Penang and he shared a room with me along with one other guy. I got the bed at the bottom in the middle of the two beds and my head was where his foot was. I still remember clearly that he moved his pillow on the other side of the bed just so that his foot would not be where my head was. I thought to myself then that he was such a considerate man. It rained that day and we couldn’t go out anywhere so we sat on the balcony and talked for hours. That’s when I realized that maybe there was something there.
Slowly we began to date and spend more time together. This year we are celebrating our 30th anniversary. He stood by me even after I was diagnosed positive and that’s what pulled me through. I’m so lucky.
UNAIDS: How did you realize that you were HIV positive?
Andrew Tan: I had a high fever and was admitted to a private hospital. The doctor told me I had a viral fever but never told me what was really wrong. I then asked him which tests he’d not yet done and he said he hadn’t tested me for HIV. I told him to go ahead and do the test. The next day he came back and he said “Oh I’m sorry to tell you Andrew, You’re HIV positive” and the next thing he said was “ You can be discharged”. I thought, He told that I’m HIV positive and I can go home. That means there’s nothing that can be done so in a way he’s telling me to go home and die. For a year I did not go to see any doctor and was very sick and I was just basically waiting to die. I was later suggested a good doctor by my friend and I’ve been with him ever since.
UNAIDS: How did you tell your family about your HIV status?
Andrew Tan: When I got diagnosed, the doctor at the private hospital informed me that it was protocol to report my case so he did. Unfortunately, someone we knew got ahold of this information and called my house. Thinking about it now, he probably did it because he thought he was doing someone a favour. Anyway, they called my mom’s house and asked “Does Andrew live here?” and my mom thinking that he was a salesman said “No he’s renting a room” and the man on the phone replied “ Oh in that case don’t rent a room to him because he has AIDS. So it’s best you stay away from him.”
UNAIDS: How did your family react?
Andrew Tan: My mom didn’t handle it well. Even though she was a teacher, she thought I was going to die. She started crying. She didn’t know who else to tell so she told my younger brother who also started crying; he locked himself in the bathroom. Overnight my whole family found out. Different people reacted differently. My mom being a typical mother, the first thing she asked me was ‘What do you want to eat?’ I did get some pretty good food for a while! My brother offered financial support and asked me if there was anything I needed.
UNAIDS: What made you decide that you wanted to do something for the HIV community?
Andrew Tan: There are so many people I knew that were diagnosed around the same time as I was and are no longer here, so many of them died because they defaulted on the treatment and just gave up. I feel so fortunate that I’m still alive after all these years. I believe God gave me this chance for a reason and it was to do something good and help people. My doctor introduced me to a few people who were newly diagnosed so that I could mentor and counsel them. Today, the list is never-ending. I am on the speed-dial of doctors dealing with HIV patients. I realised that the more I helped them, the more I helped myself. There was a time when I counselled someone and after the counselling I went home and started crying uncontrollably. I didn’t realise why I was crying. My doctor told me it was called counter-transference. I began projecting my feelings onto the person I was helping because he reminded me of myself. I had to begin learning to separate myself from the people I was counselling. It has made me feel like I am a valuable person and I can make a difference in this world.
UNAIDS: You mentioned that many people that were diagnosed around the same time as you are no longer alive today. What set you apart and made you a survivor?
Andrew Tan: Maybe I was just too afraid to die. I had such a strong support system and my family’s acceptance was so strong. When my brother had his first child, he brought her over every weekend to spend time with me in case anything happened to me. He told me to feed her, play with her and spend as much time with her as possible. This love that I received made me want to live. I set goals for myself. After the diagnosis, my goal was to see my brothers get married. Then it was to see their children. Then I wanted to see my nephews and nieces grow up. Everytime I survived a little longer, I moved up my goals. Today my new goal is to see them get married. Having something to look forward to helps.
UNAIDS: As you grow older, has having HIV had any impact on your health? What is it like to age with HIV?
Andrew Tan: It gets harder. The virus is very smart. It ages you about 20 years faster. When I first started medication, it was really tough. Those days, in Malaysia medication was not free. As newer medications came on, I had to keep buying them and it took a toll on me financially. Medicines then were not advanced and there were so many pills I had to take in a day at different times – my whole day revolved around medicines, I was not allowed to forget that I was sick.
UNAIDS: How has the situation changed for people living with HIV?
Andrew Tan: Today the Malaysian government has done phenomenal work. First line medication is now free of charge for Malaysian citizens. The only barrier to starting medication today is the patient. That’s where counselling comes in; there are counselling options for HIV positive people. There is also so much more information that’s available and easily accessible.
UNAIDS: Have you ever faced any kind of stigma and discrimination because of your HIV status?
Andrew Tan: One incident I remember was when I had to go for a dentist appointment at the hospital. I thought revealing my HIV status would be a good thing so that the dentistry department would be able to use me to teach their students about protocol to prevent cross-infections. Instead, it backfired. They kept postponing my appointment saying that no post-graduate student was willing to take my case. It just dragged on until I never got my teeth fixed or anything.
UNAIDS: What has been the most difficult part of this journey for you?
Andrew Tan: Coming out in public was the most difficult. When my mother was alive, I knew that if I came out it was not just going to impact me. I always wondered would my mom still be invited to family dinners? We had to be responsible because it didn’t only impact us. Now that my parents are not around I could be a little braver, there will still be an impact with my extended family. But what I worry about most is how my customers would react in my day job. Will it impact the business so much that I will have to leave?
UNAIDS: We have just commemorated World AIDS Day, would you like to say anything in particular?
Andrew Tan: To policy makers, I want to say that the missing piece of the jigsaw puzzle with all the government policies and the huge NGOs is the person living with HIV themselves. They need to be educated about the disease, the medication etc. The doctors used to be in control of the treatment process but we should now move to the patients themselves being in control. They are the best people to help themselves. Treatment literacy for all. The importance of funding support systems is essential.
To the young person diagnosed with HIV , I would say don’t worry, there are a lot of people who have survived. I hope to give them encouragement through my survival and I hope they can do the same for others. Think of the journey as climbing a mountain. Every time you climb up one step you pull someone else up behind you, the other person then pulls someone else up. By the time you reach the top, you can all enjoy the view. Help as many people as you can. I could climb up the mountain by myself, but it would be a very lonely view.