“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 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, 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 2 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 3 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, “ The house was mainly surrounded by Hibiscus plants which was cut and shaped by a machete. The Hibiscus plants was what was used for a ‘door’ or covering for the bathroom. Life for Jaye and her siblings was rather routine and simple and consisted of school, church and home. “We could not miss church or school unless it was really necessary”. “Sometimes, however, we had to be absent from school and travel many miles on foot through hills and valleys to my father’s farm to help reap the crops for sale”.
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 .I was accused by his mother that I was the one who came from Jamaica and infected him because he was quite fine before he met me. Being a womanizer, promiscuous and dishonest, there is no question as to how he contracted it”.
It makes a huge difference to have the support of family and friends while facing any disease, more so HIV. “My family members are now aware of my status. I kept it from them for about a year. I suffered in silence. I did not disclose immediately because of the series of events that led to that point. I was guilt ridden (and still is) because I blamed myself for the pregnancy, so I was thinking that everything that led to that was my mistake. My older sister was the first person I told. Following that, the rest of my immediate family was made aware. They were extremely angry but very sympathetic .There was some relief knowing that they finally knew and that I could receive their support. I am still receiving their support. Yes my mom knew about my status. She supported me through the years. I was grateful for that, as many persons are not that lucky or fortunate”.
Living with HIV
“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. It can be, or seems to be for some people, as each one is affected in some similar or different way. I do experience lots of fatigue particularly because of my mental state. I became chronically depressed and was in a very dark place. I was diagnosed with Chronic Depression and PTSD. Even with medication that did not help. As a result my doctor decided to add another medication to boost the anti –depressant. I became more of a recluse and most often times still is. There is sadness, fear, anxiety anger and guilt. People often say that they understand, but what is it that they understand? How can they really understand? The moods come and go, there are days when I just feel like not going anywhere or seeing anyone or doing anything. For months I can remember I was just in my room not doing anything, not wanting anyone to bother me. There is the constant worry about, what if……? What if…..? Health care is great and I am on the best medications, but I still ponder these questions, what is happening in my body? What if the medications suddenly decide to fail? What then? I have become more aware of my body and its reactions. If I see something not looking right or there is an unusual feeling, then I begin to think. There is the feeling of rejection. I have not been in a relationship for many years, and that is because I was rejected twice for being honest. That is something I do not want to experience again. It is one of the worst feelings. You are made to feel dirty, scarred, unworthy, unwanted, unclean, a death sentence and a constant reminder of what you have. That is no way to live. There is the fear of never finding that person who will accept you and love you for who you are. There is constant fear and worry of HIV disclosure, when to disclose, how to disclose, should you disclose, and the partner’s reaction after disclosure, as well as the implications of disclosure. As a result, there is the constant feeling of loneliness and unworthiness. Seeing people falling in love, walking holding hands, marrying , having fun, spending time with each other makes me sad, make me feel unworthy discarded and unloved because I know what I have and the misconceptions and stigma surrounding HIV. And what makes it worse is that the negative experience you have with some of those who are against stigma and discrimination or those who are supposed to be ‘educated’ it doesn’t get any easier. Sometimes there is difficulty in concentration as the mind often wanders. I am here, but in fact I am not here. The lack of sleep, anxiety, irregular and sometimes unhealthy eating habits, loss of appetite are all some of what I experience. I constantly worry about the stigma and discrimination and that bothers me. Taking my medications daily is a constant reminder of what I have, and that contributes to my depression as well. I know there are many who are trying to help and many who will say, “you are not alone”, but you are indeed alone. When in your private ‘space’ and you look at yourself from the outside, that is when it really hits you, that you indeed are alone. I have not reached the point of acceptance after all these years”. “On a daily basis I take three tablets which include 2 for depression and PTSD. When I was first diagnosed I was taking four tablets per day, two in the mornings and the evenings”. However, with advancements in medicine, those persons infected by HIV/AIDS are able to live longer and more fulfilled lives. Many HIV/AIDS persons no longer have to be taking three or four tablets per days. As with all medications, there are side effects. But the way in which they affect me, might not necessarily affect another person at all or in the same way. In addition not all HIV/AIDS meds have the same side effects. I am thankful that I have not been experiencing any severe side effects of my medication. I have only been nauseous a few times along with a lack of appetite. Other common side effects are diarrhea, fatigue, headaches, body fat redistribution and lactic acidosis which includes difficulty breathing, fast or irregular heartbeat, weakness, unusual muscle pain and dizziness.
Jaye provided some heartfelt and sound advice for those who are infected as well as for those who are sexually active but are unaware of their HIV status. “To those infected by HIV/AIDS I say, live in the now and not be too be caught up in fears about what the future holds. Try to find a balance to live with your medical status by not allowing HIV/AIDS to control your life. Try to be hopeful, take care of your health and most important, adhere to your medication regime. Always try to do the things that make you feel good. Try to avoid negative energies and do not let the opinions of others control who you are. Surround yourself with beautiful things, embrace today and live today for tomorrow. Try not to become a recluse but try to connect with others so as to establish a chain of support. HIV/AIDS does not define you. There is life after HIV”.
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. I can see His blessings in my life. There are still many doubts at times and my faith wavers, but I do try my best, as I am thankful and grateful everyday for what I have and how far I have come, and I know I have much more to contribute”.
The Cost of Medication
The cost of medication is expensive regardless of where one lives. According to Jaye who currently lives in Canada it cost $5,000 Canadian dollars for three months supply of antiretroviral drugs (ARV’s). However, she quickly adds that the State provides assistance with the cost of the medication. The federal, provincial, and territorial governments of Canada are responsible for the administration of their own publicly-funded out-patient prescription drug benefit program. Each offers varying levels of coverage, with different eligibility criteria, enrolment processes, deductibles etc.
Some are income-based universal programmes. Most have specific programmes for population groups that may require more enhanced coverage for high drug costs. Some examples are Non-Insured Health Benefits (NIHB) programme provide coverage for drugs listed on the ‘Drug Benefit List’. Interim Federal Health (IFH) programme provides limited temporary health insurance to protected persons, including resettles refugees, and refugee claimants in Canada through three basic types of coverage. There is also the Canada Forces Health Services (CFHS) which is the designated health care provider for Canada’s military personnel.
Regardless of the jurisdiction which governs us, we all belong to one race, the human race and should therefore 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. It bares thought that meaningful and sustainable development cannot be achieved if the AIDS epidemic continues unabated and is allowed to drain our human resources. A concerted global campaign is required as we work towards better medicines and a world without AIDS. On this World AIDS Day, December 1, 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, Jaye 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 adds salt to the wounds of the affected”.
The pseudonym Jaye was used so as to conceal the identity of the interviewee.
Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and or gender issues.
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