About the Author:
Dr. Sreedevi Warrier is currently the Head of the Education and Skill building division of Pallium India. She has completed her Masters in Palliative Medicine from Cardiff University, UK, Wales, and is an Honorary Tutor with them. Dr Warrier has been working in the field of Palliative Care now for over a decade.
1981. The year when the monster of Human immunodeficiency virus/Acquired immune deficiency syndrome (HIV/AIDS) started surfacing and wreaking havoc in the lives and minds of people. Little did we know that it was just the beginning of a global epidemic which continues even today. As per the World Health Organization (WHO), over 40 million people have died due to the disease so far and nearly 1.5 million people contracted the disease last year alone. Promising research is the closest we have been able to get to as far as a cure is concerned, but that does little to alleviate the suffering which people living with HIV (PLHIV) have to endure throughout their life. Worse than living with the clinical symptoms of the disease, is the stigma which gets labelled towards such a person. Even in today’s world of modernity, we are still unsuccessful in providing basic dignity to the PLHIV.
I was working at a tertiary care centre assisting an HIV related research project. Part of my job, was to meet and interview people afflicted with the disease. On one such working day, I reached my cabin earlier than usual. Walking through one of those long corridors typically seen in hospitals, I saw an unassuming figure sitting outside my room. She was in her twenties, staring at the floor and appeared to be perfectly healthy. We exchanged a smile when I got into the consultation room. Giving me a couple of minutes to settle, she came in, following which I started my routine of asking her open-ended questions so that she could reflect and answer.
After the usual initial starting trouble, she started opening up. I was aghast to hear that her in-laws were talking about poisoning her at a time when she was in a state of overwhelming happiness as she was preparing to welcome her first child to this world! She was living with her in-laws since the time she chose to live with a partner of her choice.
Among the routes of transmission of this virus, sexual transmission has taken all the notoriety for obvious reasons and that is exactly why she had to run away from her own family! Despite of not being at fault apart from loving and marrying someone whose past wasn’t clear to her, everyone judged her “moral side” as a shameful one to be part of a respectable society. Like in many other cases, the husband did not consent to the test. Even if he tested and was found to be positive, it would have still definitely been her fault to have given the illness to her husband, she said.
This is not just her story. As bizarre as it may sound, many women who tested negative had to take the blame for their partners being positive of the illness! After much probing and few interviews later, I realised that in the perception of the male partner, the woman must be blamed if he has extramarital affairs or multiple sexual relationships, as she did not perform her ‘duty’ of providing sexual gratification to him very well.
It has been over four decades that we are dealing with this virus. With the advent of modern technology and through cutting edge research, we know well about the virus, its risk of transmission, prevention and current treatment options. However, as far as our social skills with PLHIV are concerned, we are still stuck in the past where we find ourselves grappling with how to ‘be’ with a person having the disease. Are we ready yet to treat those patients without displaying humiliation or aversion or fear of contracting the disease ourselves? Though the knee jerk response to that from any healthcare professional is usually a resounding ‘yes’, studies from across the world shows a different reality.
If the routine stigma and discrimination (SAD) wasn’t demeaning enough, it is a common practice to label PLHIV as a biohazard in health care settings. Following this, suddenly the doctor becomes oh so cautious and follows the ‘universal’ precautions with a nowhere mentioned ‘double gloving’ among other things. Such precautions which are meant to be ‘universally’ used for ALL patients, but when followed selectively, sends out the worst kind of non-verbal communication to a patient with the disease. On the other end, the societal front, separation of belongings such as clothes, utensils from those of other family members, separation from children, ostracism, avoidance, being asked to stay away from home or live in other places are some of the situations PLHIV have to face.
Lack of awareness and understanding about the disease, regressive beliefs rooted in the past practices combined with apathy from authorities are some of the reasons for continued SADness among PLHIV.
A lot remains to be done to ensure equity as well as equality for those living with the disease, and as was aptly mentioned in the theme for the World HIV/AIDS day this year, this change has to first begin by ‘Putting ourselves to test’.
Note: This article is a republication from the January Edition of the Indian Association of Pallaitive Care‘s newsletter.
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