Living with HIV

PUBLISHED : Sunday, 25 November, 2012, 12:00am
UPDATED : Sunday, 25 November, 2012, 10:42am

I am 42 years old and have been living with HIV for 17 years. I discovered I was HIV positive after running a fever for a long time. I went to the hospital; the doctor said that I had a lung infection and ran some X-rays. The fever went on so doctors conducted a series of tests to find the cause, and that's when they checked for HIV.

When the doctor got the report, he spoke very seriously, telling me the diagnosis. Then he asked me: "Are you gay?"

I can't remember whether I answered the question. My feeling was: what does it matter? Why are you asking me this?

After three years I joined Aids Concern as a support service assistant to visit people living with HIV (PLHIV) in hospitals. At that time, the health of most of them was poor and they were very weak. The treatment then was not very good. People discovered their HIV status after it had developed into Aids. Most of the time they could not get out of the hospital. People diagnosed then were mostly middle-aged or elderly. Now they are younger.

At that time I had no idea about HIV or Aids. Before being diagnosed, I had seen a government television programme showing people living with HIV but at the late stage. The message was, "Don't discriminate", but generally the promotion was negative. Recent government messages have been much more positive.

When I was diagnosed, I told some of my best friends but not my family. My friends were very calm and not really surprised.

I told my family about seven or eight years ago. It happened in a dramatic way during Lunar New Year at a Chinese restaurant. At that time, I was not feeling well and had not worked for a while. My mother asked me a lot of questions, like why I hadn't been going to work. I'd been living alone and there was some gap in the relationship with my mother. I slammed my phone down on the table and said: "Your son has HIV, that's why he's not going to work."

There were a lot of relatives sitting around the table who heard that; then my mother, sister and cousins started crying. The others said nothing. Silence.

After about five minutes, to break the silence, one uncle said, "Cheer up, let's have a drink and eat." Then we played mahjong. It was like nothing had happened. Afterwards no one talked about it. Even my mother and sister didn't ask me anything about it. They didn't ask me, but probably knew I was gay.

They know I work at Aids Concern now and are very supportive.

Back in 1995, before cocktail therapy was developed, AZT was the only drug and on its own it was not very effective. With cocktail therapy there are a few different drugs. I was in the first group of people to try this and the doctors were not very experienced at prescribing the drugs or the quantities, so the side effects were bad. Now they have about 20 different drugs from which to choose. Before, some needed to be stored in a refrigerator, but not any more, so it is easier for people to keep it a secret from their family.

In the past, one of the biggest side effects of the drugs was they could cause lipoatrophy [localised loss of fat tissue] and change your appearance. The drugs now are much better and the quality of life is ensured. Now common side effects are stomach aches, diarrhoea and headaches, but these are short term and can be overcome.

I've grown accustomed to living with HIV. Taking the pills is part of my life, but sometimes I do get tired of it. I don't tell people outright that I have HIV, but I don't regard it as a big deal.

I don't really feel a big change in society towards HIV but I can see changes with friends and other people living with HIV. Now people are willing to join support groups. In the past people were very passive. People living with HIV should accept themselves.

I get a lot interview requests and every time the content is the same: about disclosing how I felt after the infection. It's outdated. I think this reflects that the media doesn't really understand HIV. These days people with HIV live normal lives. HIV is just like other chronic illnesses and there are many things people want to keep private, so why should people with HIV disclose their status?

I would like to encourage people to get involved with World Aids Day this year. By donating and wearing a red ribbon, it shows support and helps raise money for Aids Concern. This year the money raised will go towards a youth programme to reach out and improve sex education among young people. This is part of our work for an Aids-free generation.

I would like to get a positive message out to the public about people living with HIV. I'd like to think of myself as a good role model.

A. Wong is a counsellor with Aids Concern. His full name has been withheld for reasons of privacy. For details of Aids Concern's activities to mark World Aids Day on Dec 1, visit aidsconcern.org.hk