“Stigma and discrimination is still a big, big thing in Guyana and because of that people don’t want to say that they HIV positive. If you own family treating you bad when they find out, why would you want to tell anybody else?”
The words of a 48-year-old mother of five who has been living with HIV for the past 17 years. Today Guyana joins the rest of the world to observe World AIDS Day and this mother just wishes that the day will bring out a little kindness in the hearts of citizens for persons living with and affected by the virus.
“I would talk to you, but you can’t put my name. Who know, know but I don’t want to just broadcast it like this. I have my children and husband to think about too,” she told me as we sat down to have this conversation.
“Look, when I find out I remember it was like death because I done think I woulda dead. But you know the nurse and the social worker they talk to me and say they want make contact with me husband. But I couldn’t get he and I call me sister… when I tell she, if you hear how she answer me.
“You know by the time I could come out a hospital, because I de just get baby, everybody done know? All my sisters overseas, all me neighbours and she done tell people at me husband workplace. My sister just broadcast it all over the place. My husband resign from he work because people done start talking.
“Sometimes I does wonder how my own sister could do something like that and you know after all them years she still doing it?” She shook her head sadly.
“My sisters from overseas come home with black dress thinking how dem coming to bury me, but I still here today.”
The sister said she endured years of discrimination from her own family and neighbours, but said her husband was very supportive and she used the negativity to help her to push on in life.
“My husband went and get tested and he went on treatment right away. But me, I think I was in denial because even though they tell me not to, I went and nurse the baby and he end up contracting the virus.
“Is only after I start going to support group and so that I start accepting it, you know. I start talking about it and it really help me. My husband he does take his medication, but I think he is in some denial because you would never get he to talk about it or come out to any support group, that is not he at all,” the sister said.
At the time her family shared a home with her sister and family but because of the constant discrimination she was given permission by her mother to build an apartment at the back of the house.
“But even to that is like they want to fight me down. I don’t know what she used to tell my sisters overseas but sometimes I use to think that they just want me to die. But I said no I had to get up and get a job and today thank God I working for many years. My husband working too and through Lifeline – I tell you Lifeline and Ms Carlotta Williams [former Executive Director of Lifeline] really help me – I get a piece of land from the ministry and I get a loan from the bank and build me own house,” she said proudly.
“And is not just Lifeline. I get a lot of help, you know, at St Joseph Mercy where I does get me treatment. They never play with me they would always ensure that I come for my treatment and where I was to where I am today things really improve.
“But you know when I move into the area, I say it will be a new start, but my sister tell people there tuh. And now it have some who buse me about it, but I does try not to take it on. I just say who know, know but I not confirming anything to anyone, is not none a them business.
“And I get it at my work place tuh because I met a girl through treatment and I help she get a work but then she start staying home steady and when the supervisor talk to her she said, ‘Sir leh me tell you something I get HIV and she get it tuh and I does really can’t come to work every day,’ and she point to me. And although I say it is not true the word get around and people start treating me differently, making comments and don’t want to work with me and so,” she shared.
Not one to give up, the sister said she tried to adapt to the new working environment as she needed the money and she wanted to be strong for her children.
“I at that job 11 years now and I not leaving until I retire. Some days, I not guh tell you lie, it does be hard, and I don’t want to get up and I does call in sick and so. But I does still try. I have to push myself. I want when I die, I must leave a legacy for my children,” the mother of five continued.
She did not have only sad stories to tell. She has the story of her youngest child, the only girl among the five children.
“Well is not my biological child,” she informed me. “I know her mother from treatment and her mother family put her out because of her status and she used to live on the streets, you know. And soon after she finish get the baby, she give me the baby and I couldn’t just see this little baby not get a home. So, I went to Ministry of Social Protection and after dey done do them investigation they allow me to keep the baby. She mother dead when she was 11 months and today, she is seven and she is the joy of our family.” She smiled broadly.
Returning to the discrimination and stigma she faced from her closest relatives, she said this served to motivate her, but the pain caused by their actions was etched on her face as she spoke.
“My family is what mess up the whole thing,” she said. “I can go to any stranger and get that support, but I can’t go to my family. My family don’t support me at all. I can’t ask them for anything. But my children know, and I love them, and they love me. My husband and I, we get our ups and downs, but we support each other.
“And you know even before I could sit and tell my children my family, by throwing hints and so, make the children already know. I raise my children with the status, and I thank God for that. My family motivate me more. They thought I woulda be a dead person, but I just get strong and try to do better. It make me go out there and achieve more for myself and my kids. If anything should happen to me, I could leave a legacy for my children. I work with me husband and we build a four-bedroom house for us and the children.
“You know, Guyanese are still stigmatising even though things are being done there is still the stigma and discrimination. And that is why most people would not come out and say their status. If you decide to tell people to come out to the support group, people does be pointing out you and the stigma is not removed.
“Sometimes when I reflect what I pass through, it does have a side effect on me. But I does try to keep my emotion. Is a big challenge for me, but as I said, something had to keep me to motivate myself. When you think about diabetes, cancer and pressure and people say HIV is a death sentence. It is not. It is not a death sentence regardless of your situation. I show my family that I can live. I try to eat properly, do a lot of exercise, sometimes I does fast and pray. As I get older, I feel tired, but I try to do what I can do because I not bringing down myself. So, I work hard as much as I can.
“I would say to anyone if you find out you are HIV positive, find a support group and get some help. It will help you along the way even when your family not supporting you,” she said, ending our conversation as she was hurrying home after pulling a night shift.
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.