Living with HIV: Jaye’s story

“AIDS today is not a death sentence. It can be treated as a chronic illness, or a chronic disease.”Yusuf Hamied.

I first met “Jaye” (a pseudonym being used to conceal the interviewee’s true identity) in 2002. She was always elegantly attired and went about her tasks in a professional manner.

Jaye is approximately 5 feet 5 inches and was born in the parish of Clarendon, Jamaica, the last of five children. She mentioned that her childhood was difficult despite growing up in a nuclear family. “We were poor, but surprisingly, we did not realize it then. My mother made sure we had something to eat”.

Jaye has been living with the human immunodeficiency virus (HIV) since she was diagnosed in 1998 at age 29. According to the World Health Organization (WHO), at the end of 2016 there were 36.7 million people living with HIV, of which 20.9 million are on antiretroviral therapy.

Regrettably, since the onset of the global HIV epidemic, women have been disproportionately affected and infected by HIV. According to UNAIDS, HIV disproportionately affects women and girls because of vulnerabilities created by unequal cultural, social and economic status.

The Early Years

Jaye revealed that at about age 9 or 10, she went to live with her grandmother in St. Mary because her mother returned to school. It was during this time that she went to live with her grandmother for approximately two years until her mother completed her studies.

Life in the early days was a bit of challenge for Jaye and her family. She lived in a three bedroom house which was a combination of board and concrete. There was no inside bathroom; in fact, their bathroom was a pit latrine surrounded by sheets of zinc.

The family also had to cook outside. “It was very challenging because while we were preparing meals, water from the zinc would be leaking over the fire and we had to be blowing with our mouths and fanning’ (by using a pot cover) to keep the flames alive,” Jaye continued.

Life for Jaye and her siblings was rather routine and simple and consisted of school, church and home.

Adulthood

Just like childhood, adulthood proved to be quite distressing for Jaye. She got married at 21, having met her husband during college.

“I was still residing with my parents; however, I became a pregnant unmarried woman and was thrown out of my parent’s house. I was told to leave because of the shame and disgrace on the family and community. This was because of my family social standing”.

Jaye revealed that she was infected with HIV through her husband.

“He got ill at one point, started to lose weight and decided to visit the doctor. Tests were done for cancer and other conditions, but all results came back negative. It was then the doctor decided to do a HIV test. This came back positive.

“He was diagnosed then with full blown AIDS. I later did my test and it came back as HIV positive. I was very angry and afraid. When he became aware of my status, he was very sympathetic. However, until this year 2017, he still insists that he does not know how he contracted it.”

Living with HIV

Jaye went on: “My life has changed dramatically since being diagnosed. I am no longer the person who I used to be, mentally, physically, socially, emotionally. I no longer have trust in anyone. Living with HIV is not easy.

 “I do experience lots of fatigue particularly because of my mental state. I became chronically depressed and was in a very dark place. …. People often say that they understand, but what is it that they understand? How can they really understand?”

Living by Faith

Jaye shared a little about her faith and how her anchor in God was tested.

“It has been a struggle for me regarding my faith, as I used to question why God allowed this in my life and all the ‘domino effects’ after. Is it my punishment from Him because I was an unmarried pregnant woman? Or is it something having a greater meaning or purpose? I do not know the answer.

“However what I can say is that if it weren’t for God, I would not be alive and healthy at this moment. I could have been like countless others, being homeless, abandoned, banished, sick and suffering and without support. I am grateful everyday for His blessings and mercies.”

We need to show compassion and empathy towards those who are infected and affected by HIV/AIDS. The global World AIDS Day campaign with the theme: Right to Health fits perfectly with the WHO slogan of Everyone Counts. The WHO continues to advocate for access for safe, effective, quality, and affordable medicines in reaching the goal of universal health coverage.

On this World AIDS Day, I wish to wholeheartedly thank my friend Jaye for sharing her story, a story of hardship, resilience and survival. In all the years I have known Jaye, I have never seen her frown. She is always so very engaging and generous.

I truly hope Jaye’s story will provide some inspiration for someone who is going through a similar journey. As the interview came to a close, Jaye made an appeal in a powerful statement:

“Get tested, at least once per year. There are many who have the virus but are not aware of this. It can be present in the body, but at the time of testing, does not have a positive indication. It is also necessary to remember that the virus is not only transmitted through sexual intercourse. Hence the importance of annual testing”.

Jaye strongly believes in giving back and as such she is a volunteer with several support groups.

“These support groups assist with accommodation, medical referrals, child support, internet access and educational upgrading to name a few. The groups have been my tower of strength and support. I would not have made it this far without them,” she added.

As a society, we need to create and engage in more public education campaigns, especially those of a gender transformative nature which will appeal to men while, at the same time reduce violence and serve as a tool of empowerment for women.

Jamaica continues to lag behind in terms of passing legislation which will make it a criminal offense for a HIV positive person not to disclose their status before engaging in sexual behaviours and this needs urgent attention..

In the closing words of Jaye, “Discrimination, stigma and banishment only add salt to the wounds of the affected”.

Source: (Wayne Campbell is a Jamaican educator and social commentator with an interest in development policies as they affect culture and or gender issues. Email: waykam@yahoo.com)

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