My name is Kavitha (name is changed). I was born in a good, God-fearing family with two elder brothers and one younger sister. My great dream was to study well and to become a college professor. In 1993, I managed to join the college and started studying. It was then a twist suddenly happened in my life. I had just turned nineteen, when my father arranged a marriage for me. I was forced to get married to a business man.
In the beginning everything went well. A few years later, to everyone’s surprise, my husband was often getting sick and becoming rapidly thin, weak, with constant cold and cough. My family members asked my husband to get tested for tuberculosis. He refused to seek any medical assistance. My father-in-law, the village headman, had to be operated for cancer and was in need of blood. My husband was asked to give blood, which he refused. Under family pressure, he finally agreed to do it. It was then confirmed that he was HIV-positive, which he knew already, but disclosed to no one, not even to me, his wife. He did not care to take precautionary steps to protect me from infection. Instead, he tried to self-medicate with “medicine” from a fake doctor.
Next year, my husband was tested again, and this time, the doctor told my father that my husband had AIDS (Acquired Immunodeficiency Syndrome) and that, without proper treatment, he would die within two months. He also told him to bring me to the hospital for a test.
My husband died two months later. I was tested twice within six weeks and proved to be positive both times. Unfortunately, I was not told that my husband had AIDS and died of it. Likewise, I never knew that I myself was a HIV positive. My husband kept everything secret, but at the same time he allowed his family to blame me for his illness.
After my husband’s death, my mother-in-law blamed me for her son’s death and spread the rumour that I was possessed by an evil spirit which was haunting the entire family. One day my mother-in-law told me that I would be taken to a pujari (a Hindu priest) to cast out the devil from me. My mother-in-law kept on accusing that I was the cause of her son’s death and she did not want to lose her husband too. I was in a predicament and felt totally helpless. If I did not obey her, I would be forced to leave her house immediately. However, I refused to go to a pujari and I decided to return to my family.
Fortunately, my father welcomed me back into our home. One day by chance I found my test report in my father’s bag. Imagine my shock when I discovered that HIV positive. I will not be able to tell you how deep and intense my feelings were when I read that report. My initial reaction was one of outrage at my husband, who knowingly infected me, then at my mother-in-law who accused me of being possessed by an evil spirit. For months together I shed tears day and night. I was unable to accept my tragic lot. The greatest pain that I underwent was the fear of rejection that I had to face from all sides. Often I asked: “Why, O God?” “Why me?” But I found no answer.
In times of despair and hopelessness, fear and rejection, it was my own family which gave me courage and hope. With the support and concern of my family members, I underwent treatment and today I continue to live. Whenever there is a chance, I share my painful experience with others and say, “This illness is not caused by the devil or evil spirits but by human beings who are devils or evil spirits in disguise.”
AIDS: Medical Facts
AIDS is one of the most feared illnesses in human history and has affected many in different parts of the world, including India. The first case of AIDS in India was detected in Chennai, Tamil Nadu, in the year 1986. In 2011, twenty-four years later, according to an estimate from the National HIV Sentinel Surveillance, 2.4 million Indians were HIV-positive.
AIDS has a unique impact on women, which has been exacerbated by their role within society and because of their biological vulnerability to HIV infection. An article written by R.K Verma & T.K. Roy on, “HIV Risk Behavior and the Socio-Cultural Environment,” states that a majority of women have no risk factor other than being married to their husbands.
The figure depicts the status of the different modes of HIV transmission in India in 2012-13: heterosexual contacts (88.2 %), mother to child (5%), homosexual contacts (1.5 %), blood and blood products (1%), injecting syringe and needles (1.7%), and not specified (2.7 %).
Research on Women Affected by AIDS
Persons suffering from AIDS need medicines, financial support and proper food, of course. These supports in the physical area are a must.
My research focused on the spiritual helps that support women affected by AIDS, and what difference they make, in the eyes of the patients and of the care-givers. For this, I carried out two types of study—a quantitative study that gathered data from six hundred women who were HIV-positive and three hundred care-givers, and a qualitative approach that provided more detailed data from sixty patients and thirty care-givers. Interviews and group discussions were gathered to get detailed information.
This study shows that spiritual support does make a significant difference in the lives of the HIV-positive women, as well as in the care-givers. Hence the need of such helps, in addition to the medical, nutritive and other physical helps that the patients need.(this red sentence may be removed) AIDS affects not just the person’s body, but one’s self-perception, emotions and attitude. The patients has to deal with one’s own intense negative emotions, rejection and condemnation of others, and find the inner strength to deal with a fatal disease and its complicated and heavy social implications.
Shame, Sorrow, Fear
Talking of the emotional side, women affected with AIDS experience feelings of profound shame, loneliness, unhappiness, humiliation, pain, and grief. Social stigma, rejection, and stress lead several of them to suicidal attempts too. Fears related to the illness include that of dying a slow and painful death leaving their children behind, and harming their family’s reputation. A number of patients report feelings of anger, victimization and powerlessness. Here are some sample responses:
“Although it’s not my fault that I am being affected with this illness, yet I experience intense shame when I go for treatment. ”In the beginning, I couldn’t forgive myself for getting HIV.”“I felt compassion towards other HIV-positive women, regardless of what led them to their infection, but I could not find it for myself.”
Another woman said, “I will not be able to tell you how deep and intense was my sorrow when I was told that I was a HIV-positive. I could not face anybody, because anyone who looks at my face will be able to read my sorrow. Slowly I picked up courage and began to trust in God. I just started telling God, “Let this illness be over with me and die with me. I do not want anyone else to be affected with this dreadful disease. No one should suffer like me. Whatever good I can do, I want to do it for others. In spite of my illness, I want to be happy as long as I am alive”.
A few others said, “Why should I feel guilt or remorse? I did not make any mistake. The only mistake that I made is getting married. If I had done something wrong, then I need to feel guilty and I need to make reparation. My conscience is very clear and clean.” Or: “I am not guilty of having done anything wrong. I am at peace. But I am disturbed by the behaviour of my husband. I am praying to God for my husband that he many realize his mistakes and not accuse me falsely in order to hide his sins”; “I did not do any mistake. I was very faithful to my husband. Should the disease be a reward for being faithful to him? Sometime this illness fills my mind with guilt and fear”.
Another woman told me, “I was so scared of getting the blood test results. I did not know how to face the diagnosis. I prayed, ‘My God I want to run away and die.’ I just have to wait. Wait for virus level results, T-Cell results, results for everything. The waiting is killing me….. Still, the shock of discovering my status is something I would never wish on my worst enemy. I thought my life is over… In fact, I started thinking of ways I could end my life. Many times I attempted suicide. The fact of dying and its consequences created lot of fear in me. Just then, I thought of mychildren, and a ray of hope dawned in my mind. From then onwards, I pray to God to spare me.”
Four Facts to be Aware of
Here are four facts we all need to be aware of:
- Although AIDS is the final and most serious stage of HIV disease, which causes severe damage to the immune system, people should know that HIV/AIDS does not spread through casual contact, socializing or living with people with HIV/ AIDS, and caring and looking after them. Major modes of transmission of the HIV virus are through sexual contact, blood transfusions or needle sharing, and from mother with HIV/AIDS to child. Other transmission methods are accidental needle injury, artificial insemination with donated semen, and through a donated organ. Today there are medical treatments that can slow down the rate at which HIV weakens the immune system and that can prevent or cure some of the illnesses associated with HIV disease. While AIDS is a high-risk disease, it can be prevented if proper precautions are taken and greater awareness provided to those who are ignorant.
- The prevalence of fostered myths, false beliefs, and secrecy spell disastrous implications not only for the spread of HIV/AIDS, but also in the way it is confronted. Over and above the physiological effects of the disease, there are a number of misconceptions and prejudices that lead to persons living with HIV/AIDS being abused, misunderstood, and ostracized from the family and the society.
- Many persons living with HIV/AIDS are either reluctant or refuse to seek help and support due to extraordinary levels of stigma, discrimination, and rejection.
- Women are rendered more vulnerable, due to lack of knowledge and control over their body. HIV infections often occur within marriage or long-term relationships. India’s complicated social norms and conservative attitudes towards women make it harder to address this challenge. Although women feel powerless to protect themselves from infection.
Steps we need to take
Here are five concrete ways in which the family members, church authorities, members of religious orders and other people of good will can care for those affected and infected by this grave sickness.
- It is important that we religious and priests educate
people to a realistic understanding of this sickness,
helping them to get rid of all those unwanted and unnecessary pseudo trappings that surround/around it, especially associating it with demonic possession and the like. A good and sustained awareness on AIDS is still something needed at all levels. There are still people in this era who think that such sicknesses are a curse from God.
- The prevalence of HIV/AIDS offers us an opportunity to overcome our differences, based on region, religion, culture and politics and to work together on a response that will turn the surge and curse of this pandemic. We are all equals in front of this sickness! Since religious leaders shape people’s
feelings and vision, their involvement and participation in HIV and AIDS prevention and care programmes becomes absolutely essential. They could provide the much needed social support and counselling.
- Although there are a number of agents, groups and organizations providing care to persons living with HIV/AIDS, the care by the family is unique and indispensable, because it is often family members that individuals with HIV/AIDS turn to for help and support. Therefore, the family members must accept them unconditionally and provide them holistic care.
- As a community of faith we need to take the unusual step of setting up a working group that scales up action against the spread of HIV/AIDS and also renders caring services to those living with HIV/AIDS. We need to treat them with respect and dignity and accept them whole-heartedly like any other persons living with any other disease, expressing our greater social support and emotional health.
- Finally, we need to join hands with the people of various religious organizations and communities of faith in providing refuge, care and support for people living with HIV/AIDS and those suffering from stigma and discrimination, hatred and rejection, loneliness and indifference in society. In order to overcome HIV, we need also to address the underlying social determinants, such as poverty, women’s oppression and gender inequity.
Given the intense emotional and social impact of AIDS, the sufferers need more than medicine and food, they need loving support, understanding and helps to tap their inner, spiritual resources.
– Sr. D.J. Margaret FMA holds a Post-Graduate Degree in Mathematics, a Master’s Degree in Theology and a Ph.D. in Christian Studies. In addition to research articles in the field of women studies, she has authored Women in Mission (Chennai: Arumbu Publications, 2006). E-mail: firstname.lastname@example.org.
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