By: Inês Almeida
Illustration by: Rui Rasquinho
Despite being known of since the 80’s, Human Immunodeficiency Virus (HIV) is still surrounded by erroneous notions and ideas. The name itself is a forbidden, cursed phrase, with deadly, dirty connotations. Many people dare not utter it out loud and almost no-one speaks of the condition. Those who live with the disease deal with this stigma on a daily basis.
In the Reintegration Support Department of the Association of Rehabilitation of drug users of Macao (ARTM) we met Wai (fictitious name), a thin and shy man seated with hunched back and speaking very softly. Our handshake takes him by surprise. He reaches for our hand and smiles.
Wai was diagnosed with HIV six years ago when he was 50.
“I fainted when I got the news,” he said. “I was very sad and I honestly couldn’t tell you how I was infected. I remember this one time when I helped someone who had fallen on the street and was bleeding from the face. I also remember being in the Triangle Garden restrooms and picking up some used needles from the floor and pricking myself because I was not careful handling them”.
He ignores how he was infected. “I was completely ignorant regarding the whole process,” he admitted. Before being diagnosed “I didn’t know how the disease was transmitted. I remember seeing posters around the city, but I paid them no attention. I wasn’t properly informed”.
The diagnosis was nearly accidental. “Six years ago, ARTM announced a programme promoting HIV tests every three months, with anyone submitting for the tests getting a gift. I had nothing better to do and after hearing about the programme on a TV show I did the test to get the gift. I only wanted the gift and I was very surprised to hear that I had HIV”.
Currently, Wai is monitored by a doctor at Conde S. Januario public hospital (CHCSJ), where he goes every two months for a consultation and blood analysis. The hospital also provides him with free anti-retroviral medication since he is a permanent resident.
No-one knows he is HIV positive. Not even his wife and two children. He fears the impact it would have upon their lives. The name itself – HIV – has very negative connotations.
“I’m the only one that knows. I told no-one. I’m afraid this might affect the relationship with my family. I fear that my daughter and my son might tell their schoolmates and distance themselves from me. I fear they would refuse to be in my presence”.
According to Wai, HIV is a “famous disease” for the worst of reasons. “It’s unlike hepatitis B, tuberculosis, hypertension, heart disease or other conditions. To admit you have HIV is not good because even its name is very, very bad. I’m terrified to tell my family about my condition”.
Wai is married although he separated just over a month ago. “I never told my wife. She has no clue. Even before the diagnosis, we always had safe sex, so I never told her. After we had kids, we also wore a condom”.
His kids will never learn he is a carrier. “I will never tell my wife and children unless absolutely necessary. If they learn I have HIV, they might tell other people. Since we recently separated I’m afraid people will think HIV is the reason behind the separation but it isn’t. No-one in the family knows. No-one; just the people here at the centre. Everyone with HIV prefers to keep their situation completely secret”.
Solitude is one of the biggest fears. Patients fear that talking about their situation will drive away their families and friends, for lack of knowledge.
“If people knew how HIV really works they would not be afraid, but they are ignorant and they run from infected individuals. If I told people they would probably run from me . . . Imagine we all go out for dinner and they learn I have HIV. They would be afraid to sit at my table and eat with me. It would be better if people were more informed”.
The self-isolation problem
Nowadays, the territory suffers from lack of information and knowledge, which is evident from the attitude of many people. Despite the fear of solitude, this leads to a self-isolation phenomenon by patients. For Wai, it is the only option.
“I’m afraid of approaching people, of cultivating new friendships whatever nature they might take. I’d rather stay away from people than befriend them and live in fear that they might find out about my situation. It’s better to keep your distance from the beginning. Since the diagnosis, this has been the major change in my life”.
“Before the disease I had many friends in an association, but I decided to stay away after I was diagnosed. My friends don’t seem to notice. Sometimes they call me to say hi and ask about me. We talk, but that’s it. If I didn’t have this disease, I would be much closer to them and not be so distant”.
The fear is constant: what if someone finds out and tells other people? Then, the solitude would be complete. “I notice that knowledge about the disease among my friends is scarce, so I’d rather not tell them”.
Having had the opportunity to talk about the illness with other HIV-diagnosed individuals Wai is certain: their case is identical to his. They all prefer to keep quiet about their diagnosis, fearing to end up alone. That is why it is so important to disseminate as much information as possible about the disease. Wai’s voice changes and gets louder as he talks about the absolute imperative to inform people.
“I was infected and I feel I don’t deserve this. In the 1980’s, HIV didn’t exist in Macau and I blame the government for not protecting the residents and for not promoting better knowledge about HIV. I feel that with better information for young children and elderly alike it would be much better. This is a horrible disease to have, but if everybody was informed about it, it wouldn’t be that bad”.
Wong (fictitious name) has learned to live with the disease he was diagnosed with 13 years ago. Now 63, his face is marked with long, deep wrinkles, some running from the outside of his eyes down his cheeks. His teeth have long gone.
“When I arrived from Mainland China, I was arrested for drug consumption and sent to Coloane prison. I had medical exams there and found out I was HIV positive”.
Confronted with the diagnosis, he refused to accept the facts.
“I didn’t believe it at first. It was so sudden, and I was shocked. On the Mainland, I consumed drugs and shared needles. I knew I shouldn’t be doing that and I would normally refuse to share needles but one day I bought drugs from someone who also gave me a syringe. It came in a sealed bag so I thought it was clean, but it probably wasn’t”, he laments.
Wong has a wife, children and mother whom he seldom contacts, and they have no idea about his condition.
“I rarely go home, and they never contact me, so we never see each other. I left my parents’ home when I was a teenager and I rarely talk to my family”, he said, with his eyes fixed on his knees and his back bowed.
“I don’t want them to worry, so I didn’t tell them. I also didn’t tell my friends or anyone else. If anyone knew, they would think I could infect them because they have no proper knowledge about HIV”.
Twice a year he goes to the public hospital for exams and treatment, if necessary. “In the beginning, I went three times a year, but then the doctor told me the situation was stable, so I started going twice a year for exams and treatment”.
He has not worked for a long time due to a serious back injury, and in the beginning it was hard to live with HIV.
“I kept away from people and that impacted my daily life immensely. Now, I have accepted it and just deal with it”.
Since he never told anyone about his illness he has kept his friends but Wong is uncertain if some of them know of his condition. “When I was in prison, they had a special wing for HIV-infected inmates and they knew we were infected”.
Tribuna de Macau tried to contact the Correctional Services Bureau for comment but without success.
Joe was 32 when he was diagnosed. At the time, he was receiving financial aid from the Social Welfare Bureau for drug abuse treatment, thus he had to submit to yearly blood exams. One day, the results came in, along with an undesired diagnosis. Now 47, he remembers how he felt at the time.
“I was very young and I became very sad. I knew I wouldn’t be able to have kids, at least for a very long time. I always wanted to be a father. I don’t anymore, but at the time it was very important. So, when I got the results I took pills. I wanted to die. Sadness overtook me and I felt desperate for being so young and having this disease. I also took drugs at the time and my family didn’t want anything to do with me”.
He admits that 15 years ago he ignored the fact that sharing needles put him at risk of contagion, saying, “I had no idea HIV could be transmitted that way. I really knew nothing about HIV. I thought that being infected with HIV was like winning the Mark Six lottery. Very hard to happen and it only happened to others”.
His relationship with relatives is very complicated. He was close to one of his sisters but the relationship suffered with the diagnosis.
“I have two sisters and a brother. I also have my mother with whom I live. Sometimes, I see my older sister, but I never see the other two. They (his younger sister and brother) drifted apart even before the disease. We had family problems before that. They thought my father treated me like a king because he would always give me money when I asked and they didn’t like it. My father loved me very much, unlike them. It has been like that for a long time”.
Joe’s father died 15 years ago, having never learned about his son’s condition. The rest of the family, however, do know.
“My mother accepts it. She’s 80 and she needs me. My sister knows nothing about HIV. I try to tell her about it but she is always afraid of me because of it”.
It wasn’t Joe’s choice to share the information, confiding, “My family learned about it just two or three years ago when I had a serious leg wound and I had to stay in hospital. The doctor who treated me told my family. Otherwise, they would never have known about it”.
The doctor’s decision left him very unhappy as he was not expecting his family to ever learn about his HIV diagnosis. He was confident the doctor would not say anything thus he did not explicitly tell him to refrain from sharing that information.
“I imagined that it was private information, so the doctor wouldn’t even consider telling my family. After being discharged from the hospital, my sister asked me if I knew about the disease. I didn’t answer either way. I told her that I would be very careful, if indeed I had HIV. Later, I admitted that I already knew”.
His sister does not deal well with Joe’s illness, and his eyes fill with sadness when recalling the rare times they meet.
“On occasions like Lunar New Year and other festivities we meet for a few moments but that’s it. I have lunch or dinner with my older sister but she separates my dishes and chopsticks because she’s afraid to catch the disease by sharing food. This makes me very sad. It’s very painful to see my sister behave like this because I know HIV is not transmitted in this fashion. I tried to explain it to her but she doesn’t understand . . . She doesn’t even want to talk for fear my saliva droplets may infect her. She wears a mask when she’s with me”.
His friends don’t know.
“I didn’t even tell the people I used to consume drugs with, only those who helped me in my methadone treatment. I also said nothing to friends outside of my old drug consumption circle. Anyway, only a couple of my friends still take drugs and I don’t see the need to tell them. I’m afraid they’ll also stop being my friends and I’ll be all alone”.
Fear of contagion
Since he was diagnosed with HIV, Joe has not held down a job, saying, “I used to do deliveries before the diagnosis but because there’s a good possibility of getting hurt and bleeding I was afraid to infect my co-workers. I’m scared of getting hurt in my daily life and infecting people who would probably help me. If that happened, I could transmit the virus if we both had open wounds”.
Thus, he lives as isolated an existence as possible. Every six months he goes to CHCSJ for the usual tests and treatment. Every month, he collects his anti-retroviral medicine.
Despite being diagnosed so young, Joe managed to marry but upon learning of the diagnosis separated from his wife.
“After the diagnosis, I separated from my wife because I didn’t want to infect her. I chose to leave her but I never told her why”.
Today, it is even harder to deal with the disease but Joe no longer contemplates suicide.
“I have this disease and I wish I hadn’t. In the beginning, I thought about ending my life because I would be free of what people thought about me. For many years I have made no attempt on my life”.
Now, he says, he just does not think about it.
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