My name is Paulo Rogerio Carvalho, and I live in Copacabana. I have been a carrier of HIV since 1988.
I got the diagnosis in 1988, but I wasn’t nervous. I never had any opportunistic diseases, never had anything. I simply went and got tested because I thought I should. I had no symptoms. The doctor expected me to have some kind of crisis and wanted me to look for a psychologist. I said, “There is no need, everything is ok.” I got my results and left. She took pity on me, expecting me to throw myself under a car or something. But I got the results and went to the beach. After two years, I told my sister about it.
Sometimes I think, “But it was so fast, I caught it so fast,” because I was never a promiscuous guy. I thought it was unfair because I never used any drugs, never took part in any sort of orgy, and I thought this happened only to promiscuous people. I have done nothing wrong. I was a bit upset about that, but I do not moan about having AIDS. I don’t know how it happened, but I don’t spend the whole day with hang-ups, thinking I’m going to die. I let life take me, and that’s it.
What upsets me is the fact that I have to take the medication regularly. If I am in the middle of something I have to stop and take the medicine. At eight in the evening I have to take three pills, then another two at nine o’clock. I have to wake up early and it disrupts my sleep. I have always had problems sleeping—I wake up easily and I suffer from insomnia. I have to take some of them together with some food and at times I don’t want to eat anything. Sometimes you get carried away talking and forget about the medication altogether.
The first medication I was prescribed was a big white pill. At the time I owned a beauty salon and a clothes shop. I was travelling constantly because of them. I had to squash the pill into a paste in a glass so that I could take it. I had to be locked somewhere whenever I took it, because I would be lying on the floor with cramps in my stomach, terrible sickness, and I used to eat like mad and ended up putting on a lot of weight. I don’t know if that was because of the medication. I ate to get the taste of the medicine out of my mouth. I had a word with the doctor and he changed my medication to Invirase. They were four capsules with meals, three times a day, plus AZT. In two years, this medication damaged my stomach, and disturbed my sleep.
Now it’s easier. All in all, there are three pills every twelve hours. I complain but the medication is easier to manage. Since I have never had any opportunistic disease, I went on for years taking Viread and AZT only. By sheer neglect—I would take the pill without food—the dosage had to be increased. Apart from that, I go on living with this damned disease.
There is no point in complaining; I have to take this medication for the rest of my life. At least, as they say, you only die of AIDS if you want to, if you don’t take care of yourself. It was worse when there was no medication at all, and people would die straight away. I shouldn’t complain.
I started taking the cocktail in 1996. Sometimes I lose my patience, or I forget. I take one drug, then forget, “Did I take it already or didn’t I?” Then I go back and take it. These medications have really bad side-effects, nausea, you get shaky. So to get away from all this, to see people, I go out, I go to the beach, to the gym, and then I don’t have time to think negatively, to think nonsense, like people who have tried to kill themselves, things like that.
I go to the beach because I’ve always liked it. I was born by the sea. I go to there to relax, talk to people, or just stay by myself and go for a swim. It’s where I interact, meet other people, talk a little, have a conversation, work out, swim in the ocean. Because if I’m home alone a lot, stuck there, I get kind of down. So I have to go out and see people so I can feel better and so I won’t have time to think about negative things. I go on with my life.
Sometimes I am out somewhere and I have to excuse myself to go to the restroom so that I can take the medication. I haven’t told anyone about it, apart from my mother and sister, no one else. It’s a bit uncomfortable. The truth is that I don’t have real friends, true friends. I’m a lonely guy and my family is very small. I only have my mother and my sister, and two half-sisters on my father’s side who live in Portugal. My family is Portuguese, and the majority is already dead.
I have few friends. One of them is also HIV-positive and apparently got infected in 2002. She made a scene when she found out, but I have never ever told her that I am HIV-positive. She showed me her results, but I have never trusted her enough to let her know I am also HIV-positive. None of my friends know about it. Only my mother and sister do, and even so I do not take my medication around them. I don’t talk about it to them; they don’t talk about it to me. It is as if I did not have it at all.
I am tired of hiding away. I believe the prejudice should come to an end, and if someone wants to talk about it, let them do it. It is tiring sneaking out to take the medication, disguising yourself to go to the laboratories, people saying: “You look pale, fat, thin.”; “Your hair is thicker, thinner.”; “What is the matter with you? You did not sleep well?” People constantly point out your appearance, and I am tired of it. If more people find out about it, I don’t care.
There was a friend of my mother’s, who was married. I had known her since I was a kid. In 1978 she left her husband to live in the US—she had a preference for dating younger men. She came back to Brazil in 1982 already diagnosed with HIV. She suffered tremendous prejudice. Her family did not accept the fact she had relationships with younger men, and for leaving her husband. She would only talk about it to my mother, who is a nurse. At that time no one knew that AIDS existed. She died in 2002, alone. Her family did not see her. She was abandoned, spent lots of money and died of cancer.
I knew another young man. His family left him in a hospital and never saw him again. He ended up killing himself later in his own apartment. There still is huge prejudice.
It is a bit of a nuisance, at work or in your social life, when you have to take the medication. You might be at a party, at the movies and someone goes, “Where is he?” In your love life is the same. There are people whose partners accept it, but I don’t see myself telling another person, “I can’t go out with you because I have HIV.” The person who passed it on to me never told me about it. I know who did it but I was never told.
I haven’t stopped loving; I cannot live on my own. Obviously I will not cause someone else any harm. I do not tell them I have HIV, and I don’t know whether they have it or not. I postpone my date if I cut myself while shaving. I always look out for wounds in my mouth and I know how far I can go. Therefore once I am being cautious about it why should I tell anyone—so that they can take pity on me? So they can get away, or talk to the neighbours about it? I’d rather keep it to myself.
This campaign won’t be very visible. It will be aimed at a particular group, not to the whole country. The people who will see this campaign will not go around talking about it. They will forget about me and my face eventually.