Living with HIV for more than seven years has caused a mother and wife in her 50s to see many a dark day, but as she reflects on her life’s journey after being diagnosed she believes that the diagnosis has been a blessing in disguise as it has seen her become empowered as a woman and an individual.
“… I have grown. It changed how I use to think about life. It gave me a different perspective about life. It has also led to me loving myself and showing me how much my family cares for me and they don’t discriminate against me,” she told the Sunday Stabroek in a recent interview.
Since she was diagnosed, Megan (not her real name) has learnt all she can about the disease and through her advocacy to help other women she has also helped herself to accept her status; she pointed out that first step towards living with the virus is to accept one’s status.
However, she admits that she sometimes becomes overwhelmed because there is so much suffering by persons who live with the virus and many times her efforts do not appear to be enough. That feeling overpowers her when she is dealing with the problems of others while she herself is facing difficult times and there is no one who would ask her: ‘Are you okay?’
She recalled that shortly after she tested positive, she would take long walks and many times she felt as if she wanted to end her life but then her children would come to mind. “I would advise people when they are stressed out not to go to the seawall. I started to take stress management classes and my social worker, she helped me a lot,” she said.
But even though she has been working as an advocate and has spoken openly about living with the virus at various forums outside of Guyana, she is still not prepared to make a media disclosure.
“It is not about me publicly disclosing, because to be honest I would not have a problem. But the issue it is not just me it would impact; I also have to think about my husband and my children and you know I have to talk to them first…,” she told this newspaper when asked if she was willing to put a face and a name to her story.
‘Losing weight rapidly’
Megan recalled that she first realized something was wrong when she began to lose weight rapidly and she was often stricken with the common cold. But it was a sensitising World AIDS Day advertisement that caused her to get tested.
Upon receiving what she considered the dreaded news, Megan said, she began to cry and even though she was advised to join a clinic immediately, she went home, told no one and became withdrawn.
“But it was hard, you know, because I was getting so weak. I couldn’t even climb the stairs I had to like drag up lil bit by lil bit. And when I cooking I use to had to do something then lie down and get up again because I was so weak,” she shared.
But another serious attack of the flu saw her visiting the health centre. There, the doctor pointed out to her that she had visited with the same complaint over six months and he recommended that she be tested for HIV.
“I start to cry right away and I tell he that I already get test and I positive. But he told me to get another test and that was positive too and then he say I have to get some blood work before I get treatment.”
She did not want to be placed on treatment but was convinced by the social workers she was sent to even though she initially she decided not to return for the results of the various other tests she had done.
“But then the nurse called me and she said the doctor said I had to go on treatment right away because my CD4 was at 40 and that I had an attack of acute stroke,” Megan said. (The CD4 count is a test that measures how strong your immune system is. The normal range is between 500 and 1500. Megan’s low count meant that at that time, her disease had progressed to AIDS.)
Just around that time, Christmas was approaching and her partner at the time asked her what she wanted for Christmas, she told him life and when he enquired further she told him she was HIV positive.
“You know right away he carry me the room and went on he knee and tell me that it have to be me and he secret and that I mustn’t tell nobody and you know is then I know is he give me,” Megan said.
She said she went “berserk” and moved out. It was at that point that she told her children and other relatives of her status. Some of them wanted to harm her partner at the time but she begged them not to because she felt since they both were infected, it was better if they remained together. “But who I didn’t tell is who I didn’t remember, I didn’t really care who had issue or anything I just tell them.”
Megan returned to the relationship, but she recalled that her partner abused her emotionally and psychologically even though at that time she was unware of those forms of abuse. He was also very promiscuous and had multiple sexual relations, many of which she was aware of and there were times when she would even confront the women.
Megan said over time she became very empowered with the assistance of her social worker and eventually she separated from her partner, and while it was difficult it did get to a point where she stopped taking his calls.
She then met someone else, but before she became involved with him, with the help of her social worker she disclosed her status to him.
“He was taught about HIV and AIDS and he tell me that he still love me and he want to be with me and so we start living together and then we get married. My husband is very supportive and with my children and other relatives I get a lot of support,” Megan said even as she acknowledged that many women who are HIV positive do not have that support base.
Learn about HIV
Following her diagnosis, Megan said, she started to learn more about HIV and also about the treatment since initially she became very sick after she was placed on treatment. She later learnt that she could not take the tablets on an empty stomach and she then ensured that she had something to eat before.
“It is like if you reborn. It is a rebirth because for me you have to start training your body over to adjust to the medication. The medication is how you think it reacts to your system, once you start ARV you have to accept it and I think it works faster,” she said.
She cautioned that adherence is very important for the medication to be effective.
“You must adhere to your medication that is the only way you would feel strong and healthy. It is not only about taking medication but listen to the direction the doctors give,” she said.
She also advised persons to use whatever they have in their homes to ensure they make a meal and eat before they take the medication.
Megan said she has since become an advocate for women living with the virus who many times do not have a voice and she started attending support group sessions where she interviewed women. It was through the interviews that she learnt that many of them were abused and many were housewives who were not allowed to speak up for themselves.
Her journey so far has taught her that first persons with the virus have to be comfortable to disclose because when this is not done one would remain depressed and sometimes they would even become angry.
“You have to be comfortable in your environment. Acceptance is the key. People would talk, you can’t stop people from talking. And it is not only non-positive persons who would talk but also positive people… you just got to accept that as part of life,” she reasoned.
“For me it is not about what people think but what you want to achieve,” she added.
But she said many of the positive persons are afraid to talk and this hurts her even as she called for more sensitization work to be done. Most of the persons don’t know who to talk and that hurts her. Guyana needs to be more educated on the issue because for her if persons are not allowed to disclose their status then Guyana would be unable to achieve the United Nations 90-90-90 goal.
The goal is that by 2020, 90% of all people living with HIV will know their HIV status 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy and 90% of all people receiving antiretroviral therapy will have viral suppression.
“Disclosure is the key to success, and persons have to stop discriminating against people living with HIV. Living with HIV does not make you a bad person. If persons get to disclose I think the virus would not spread as rapid but it is because of the stigmatizing many persons are afraid of talking,” she said.
She suggested that as early as Form One children should be taught about the virus especially for those who may have been born with the virus and are on treatment.
Megan called on positive women to empower and educate themselves and not allow men to control their lives.
“Too many women are allowing a man to control their every move. For me empowerment has help me and I ain’t letting HIV take me no place,” Megan said.
Women who are in need of assistance can join the Guyana Community of Positive Women and Girls (GCWAG).
GCWAG was formed in 2015 through the leadership of Crystal Albert. As of July of this year, GCWAG, which is also an arm of the Network of Guyanese Living with HIV/AIDS (GT+), had over 90 members.
Persons interested in learning more about GCWAG can call 691-7297 or email email@example.com.