There is a call for more to be done to help families first of all accept that a loved one is HIV positive and secondly and most important, to give the infected person the support they need.
“I don’t see any programme geared for providing strength to assist families… the family has a vital role in this fight because first of all the government, NGOs can’t do everything and who next is in line – the family, and I have seen it with issues developing in my family… they need that help,” said an infected HIV activist.
Brian (not his real name) has been living with the virus for the past 12 years and while he is comfortable talking about his life, he refuses to allow his name to be published because he is afraid of the spin-off effect it may have on his family members.
He told the Sunday Stabroek in a recent interview that support is critical in the fight against the virus, because he sees daily the effect a lack of family support has on an infected person and the impact the news a loved one is infected has on a family.
And for him it is more than just being HIV infected since he is also a man who has sex with men (MSM), and this news too was difficult for some of his family members to cope with. While some members know of his status they don’t know of his sexual preference, and while others are aware that he is an MSM they do not know he is HIV positive.
The HIV activist said that while he has known his status for 12 years he has only been “open” about it for about three years, but there are still certain barriers.
“As it relates to my comfort level I am still not at a place that I would like to be because I have to think about my family and the repercussions that may come about if I was to be totally open… because I don’t want to add more stigma and discrimination to my family…” he said.
He described his family as his “backbone” who keep him going, and he does not want to do anything that might see them “pulling away from me.”
He was just out of school and was in the process of taking out a work insurance policy when the world as he knew it was shattered.
The crude manner in which the news of his HIV status was delivered is something Brian said he would never forget.
He said he was sent to a well-known female doctor to have the medical done and after not hearing back from the insurance company he contacted the doctor.
“I called her and she said ‘you will have to come in to me, Sir,’ and I went in and she was like, ‘You in know what sweet in goat mouth does bitter in he bamse.’” These were her words before she told the shocked young man that he was HIV infected.
“She said ‘You were turned down because you are HIV positive,’” he recalled, adding that the news did not sink in immediately.
“I was in my second year at UG; I left, everything just plummeted, the outlook that I had on life – it changed drastically,” he said explaining that he left the country abruptly.
Since then he has been in and out of the country, his departure depending on how depressed he is feeling.
The activist said while there are support groups to help persons who are infected, no one knows a person better than their family members, and so they should be used as a resource in the HIV fight.
“Stigma and discrimination is broad based, and it is always going to be here; it is just about how you react, but we are looking at the infection as it relates to HIV/AIDS and its spread,” he said.
Describing the country’s “buggery” law as “antiquated,” Brian said that even if the country is shy about having legislation which empowers the MSM population, the law definitely needs to be re-visited.
“It [the law] imposes a high degree of difficulty on practising safe sex and accepting all the services and interventions, and it is a challenge… because they [MSMs] don’t come to the support groups,” he said.
He pointed out that there are many MSMs who are on the DL (‘down low’) with their sexuality and the law could play a critical role in empowering and serving as an intervention for reducing stigma and discrimination and the incidence of it in the MSM population.
“I do believe that it should be abolished if we are looking at a national public health strategic plan, because those were laws that were inherited from colonial days and those people have since moved away from it…” he noted.
He pointed out that the law drives persons to become more closeted and should be dealt with from a national public health stance. According to Brian accessing health care services is difficult for him, because while it is free, “to the extent to which I would like to be totally deep with my explanation to seek the desired amount of necessary help… I would not want to do that to avoid stigma and discrimination.”
Brian would never raise issues that may indicate his sexuality as he wants to avoid marginalization and further discrimination coupled with the lack of confidentiality.
He related that lately many MSMs are being ostracised by their families because of wanting to lead this lifestyle “or trying to become aware of who they are.”
“Mind you, I am not telling anybody’s family what is best for them, but still when these families do not understand or gravitate towards how best they can handle situations like these they are still contributing to more exposure and putting this vulnerable population to being more vulnerable,” he said.
Meantime, Brian said that intervention that is done for the MARPs (Most At Risk Populations) community consists of outreaches where there is HIV education, and a support service is offered in a group setting where persons can meet and draw strength from each other’s stories and coping mechanisms can be formulated. Counselling and testing services are also done.
He said that while much has been done in the fight against HIV there are areas which remain untapped, and he gave the example of mental health and gender-based violence which he said can fuel and promote new infections: “What programmes are there to fill that gap or reach that marginalized population? I really don’t see any.”
According to the activist persons have to develop their own resilience and help their families and volunteer to help others.
“Yes, you are grateful for them offering health care services, but there is still a lot that needs to be done… in terms of [how] they deal with people living [with] HIV and AIDs, especially those from the MARPs population,” he said.
Brian is calling for more sensitization to be done on the side effects that the HIV drugs have, since he does not believe persons are aware of these. He said he has been using the drugs which he started taking in another country, and it was because he thought he was going to die that he returned to Guyana.
His physical appearance triggered questions from his mother who suspected he was HIV positive, and while he denied it initially in the end he was “tricked” by his mom who asked him to take her to be tested. His mother has been supportive and only recently he said the family was dealt another blow when another relative tested positive.
Brian says while he knows he is responsible for his own protection he would not forgive the person who infected him, as that person knew they were infected. He said he always used a condom but one time his then partner slipped off the condom and from then on they started having unprotected sex.
He felt at ease because he did not believe that his partner was infected, but when he found out he was infected he learnt that his partner was already taking treatment for the infection.
“I can’t talk to them… even though they have apologized,” he said of his former partner adding that what happened to him took a big chunk out of his life and has had an adverse effect on his family.
“If I had one wish to change everything, my sexuality, my health status, I would, but of course I don’t have it,” Brian said.
He went on to say that his life is not an easy one to live because “being gay and HIV positive is not easy.” Even in his activism work he finds difficulty, as some of his colleagues take it for granted that they can disclose his status without permission from him.
Relationships, he said, are also difficult to build as persons are not comfortable being with someone who is HIV positive, but now he would not enter a relationship without disclosing his status.
“It is like people tell you with their attitudes that being HIV positive you are already dead; it is a death warrant even though they would say otherwise,” he said.
Brian wants to “tap back into his life” and start living again and not just existing as he has been doing in the past.