“I have been living 22 years with HIV and if you look at me you cannot tell but I would not tell any and everybody that I have HIV because the stigma and discrimination is not nice and so I just trying to live my life,” the 46-year-old mother of six told me.
I chose to speak to women living with HIV, so that people could understand how some of them are affected by stigma and discrimination in the hope that it would help engineer change. Maybe one sister reading this piece might change how she treats people whose HIV status she is aware of, or she might just be more careful of what she says. I am still at times flabbergasted, to say the least, when I listen to people, who should know better, speak about the virus and how they treat those who are HIV positive. At other times my blood curdles but I always attempt to use the opportunity to educate or inform them, so that going forward they might stop to think before they speak or act.
Back to our sister who has lived with the virus for many years.
She shared that she had lived with a man, with whom she had one child, for a number of years before they separated.
“After we separate, I start feeling unwell and I know he was a busybody, so I decide to go and get a HIV test,” she said.
“I got a positive result and it was hard, but I had a good counsellor-tester. She help me to know that it was not the end of the world. Those days they had no medication and HIV was seen as a death sentence. I did not tell anyone. I used to do one job, I end up doing two jobs and going to classes just to take my mind off of it.
“At first, I never used to go clinic, I just use to sport and party. I used to drink rum. Me alone would sit down with the bottle of rum and drink, that was my way of coping. And I would party from Wednesday to Sunday. Monday and Tuesday, I used to stay home and drink because party never use to be on those days.”
At the time she lived with her mother and sister and neither of them questioned her new behaviour pattern, but her mother took care of her then six-year-old daughter and her older son took care of himself.
But all that changed one day when her sister, who was a nurse, became aware of her status.
“One day I decide to get a checkup, you know. For them to do back the test to see if it was really positive and I get the same result. I then decide to join the clinic and I would go. Well, my sister was a nurse and like she use to do the filing and what I get to understand is that she come across my name somehow.
“She never ask me anything or so. One day she just come home and said, ‘Mommy I get a place to rent come leh we go and see it.’ When they leaving I mek a joke and ask them if is me name them going and talk because she didn’t invite me to go and see the place. …It was my status she was going on the road to talk about,” she said sadly.
“When they came back everything change suddenly. They didn’t say anything to me but just so my mother tell me I must stop cooking fuh she and that she didn’t want me and my children clothes washing with she own.
“I suspected that they know about me being positive, but I never ask I just leave it like that. My sister did not want her son to play with my children and when I cook, her son could not eat from me. We were there. The stigma and discrimination was bad. I never got it from outside like what I got in my own family. Every minute was something,” she said, close to tears.
“I was still fighting up behind my classes and you know what my sister words were to me one day? She said, ‘You better stop say that you going to classes because you will not become nobody, put up you money for when you dead to bury you and you children because me money ain’t burying nobody who get AIDS.’”
The sister’s friend, who had accompanied her, was also close to tears at this juncture. It affected her, she told me, even though she had heard the story many times before.
The sister said that was the first confirmation she got that her family knew of her status, but no one ever came out and asked her.
“At that time my nephew could not understand why he could not eat from me. My sister move out later and it was me and my mother and my small brother and they use to discriminate [against] my children because they think they were positive.
“My mother start telling everybody about my status. We move to another place and she was not well, and it was me who use to look after her and she had to start eating back from me. But even though we went to a new village where no one know us my mother still tell people about my status,” she said.
“I live with her about three more years, but the stigma and discrimination was so bad that now my two oldest children who are adults want nothing to do with my mother because of the way she used to treat them. At one period of time, I wasn’t working, and she would actually cook and lock up she food, and don’t give them nothing to eat. She used to lock up her salt, sugar and even clothes pin,” the sister said of her mother.
Her mother also continued to tell persons that she was HIV positive.
“A young man came into my life and she tell him, but he didn’t take it for anything, he assumed that she was telling him because he had a reputation to be a bad boy and she wanted to keep him away from me,” she continued.
“And you know one day my sister came to me crying because she had just separated from her child father and she heard he was positive. She ask me to go with her to take the test and she was negative but her attitude towards me changed from that day. … I could have gotten her fired because when I told my doctor what happened he ask for her name because he said she had no right to disclose my status. But I never [gave him her name] and today she is married and living in another country and still working as a nurse,” she said, adding she did not want to “fight evil with evil”. Her sister and her sister’s husband are both very supportive toward her today.
She currently lives with her partner, to whom she will be married shortly, and her four minor children. Her adult children have gone off on their own. The two older children know of her status and the younger ones know she has to take her pills and would help to remind her to take them on time, but they are not yet aware that she is HIV positive.
This sister has been on medication since 2006, and over the years she has worked with organisations that provide counselling and testing for HIV and according to her, “I love what I am doing, anything pertaining to HIV I am there.
“I now have a kind of so-so relationship with my mom and she does not really discriminate against me anymore, but she never came to me and ask me anything about my status, never ask whether it is truth or lie, she just change her attitude.
“Look is 22 years I positive, not 22 days, and it was never an easy road. Now the road is much easier because I start associating myself with persons that are positive, even if they find out they are all working in the same environment.
“And I am happy that since I start taking the medication, I never had side effects but sometimes I would get mad and don’t even take it for one or two days. But I am not advocating that anyone should take a holiday from their medication, it is important that you take it on time all the time,” she quickly added.
“Looking back, I still feel sad about how my family treated me because you know all I had needed was the support. I did not need for them to give me a handout or anything. I just needed to know that there was someone I could talk to, just the empathy not the sympathy because I was not looking for any handouts.
“And I would like to say positive people who are able to work should be allowed to work. Once the persons are willing and capable and able to work you should give them a chance.
“It is a shame that people still have this thing that it is only prostitutes or homosexuals who get HIV. I would say to people anybody could get it and ask them to support [their] relatives and just give them love because when you support us, we would live longer because we would accept and take our treatment. With all there is so much of information out there persons still stigmatise and discriminate against relatives. Some patients are always worried about how to use their medication and I would advise them to have a pill box or put it in a vitamin bottle,” she said.
“It is important that you support your families and there is need to give family members education because a lot of them have families who are positive and they don’t know what to do,” her friend added.
“It is not easy disclosing because you don’t know what will be the outcome…, but it is a big thing because it helps you with support in drinking your medication. But it comes with discrimination.
“And nobody have the right to disclose my status. Even if I tell you, you are not supposed to tell anyone else, let me do it if I want to.
“Just be kind to us, you can’t get HIV by being nice to me. Being nice will cost you nothing,” were the sister’s parting words.
If you are a woman who is HIV positive and looking for answers or in need of support, contact the Guyana Community of Positive Women and Girls (GCWAG). You can call 691-7297 or email cmarlyn9@gmail.com.
