Self Care For People Living with HIV/AIDS

July 15, 2010 11:10 am

by Lipi Chowdhury, Newsletter November 2005

A Workshop on “SELF CARE” for PLWHA sponsored by DOH International, organized by Sankalp Rehabilitation Trust was held on 4th October, 2005 at the Mumbai Central YMCA. As the name suggests the workshop looked at the multifaceted aspects of self care especially with respect to Drug users living with HIV.

It was an all day long workshop divided in to various different sessions, each dealing with an important aspect of Self Care. To begin, since the participants were relatively unknown to each other, the workshop was started with an ice breaking introductory session which seemed to induce ease and relaxation about the workshop, which was a first time for a lot many participants.

The first session was on “ACCEPTANCE” and was taken by Eldred Tellis. Here certain stark things came to be known of, the very first thing was that ‘denial’ is a very important emotion which stems even before any other and is felt by one and all. It is an emotion that is felt by not only the addicts or the seropositive person but also the family and the social fabric around the individual. The individual instead of seeking out for help feels he can deal with whatever the problem is by himself and secludes himself due to the intrinsic ego pressure as well as the social stigma attached to their behaviour or situation. All this is coupled when there is an association of drug addiction and HIV/AIDS. The common escape routes for both family and individual are either to be put in the prison to force rehabilitation or marriage as it is seen as a social institution said to be a remedy for such issues of addiction.

Progressing from the emotion of denial, one moves on to stages of anger, cribbing and discontentment wherein the emotional release is on and even from the family. This is a crucial phase where either the persons seeks for help and GOD or sinks deeper. And Sankalp plays a major role here as it teaches or helps the person with ‘Self Acceptance”. In the workshop the difference between Acceptance and Knowing was brought about and it was emphasized more than just knowing and passive acceptance of self condition, it was more important to imbibe a deep rooted and active acceptance to look at the positive and the revocable side of life. The aspect of sharing and seeking for counseling was empathized with an example of a being able to survive out of a room filled with smoke opening a window, hence opening channels of communication during the phase of denial, sadness or fear of loss.

The second session was about “SPIRITUALITY” which was taken by Rajeev who took a 10 minute meditation exercise and highlighted the various above mentioned aspects of self and how one could cleanse oneself of lack of self control from and within with the help of Spirituality. He spoke of problems arising when there is a conflict between social and sexual instinct and that Vipassana could be incorporated in daily life as it had positive effects on self well being .It was emphasized that it is only when one lives in the past or future that anxiety begins resulting to undesirable harmful behaviour and if one learns to live in the present then anxiety can be controlled. There was a difference brought out between “I” (unseen powerful) and “me” (awareness) and one understood that harmony comes only when one consciously recognizes and separates the two. The participant’s were given an idea of the Vipassana Meditation camps and how they could benefit from these.

The third session was on “RISK REDUCTION” which was taken by Mini Tomy and Dr. Malik. Herein safe ways of fixing for self and others especially with needle care ; future prevention for relapse and peer education information was imparted. Furthermore, the concept of safe sex and STI’s were explicitly talked about with a demonstration of condom wear , usage and disposal.

The next session was taken by Dr.Shantanu who spoke about the “MEDICAL AWARENESS” dealing medical aspects related to drug addiction and HIV/AIDS. This session was based on preliminary information about substitution drugs for drug rehabilitation and ARV for HIV/AIDS. It mostly dealt with questions and queries from the participants. This helped understand the fears of the participants related to the illness , physical entropy and medicines to help bring clarity and assurance.

The fourth session was of “ROLE PLAY” which was taken by Eldred Tellis. The participants were divided into four groups each had a role to play. The questions and issues which each group had to ponder and enact were all covering the various aspects of self awareness and care. These were:

• Enact a person who has just found out his seropositive status and does not want to tell partner or spouse and how one could counsel him/her
• Enact a person who is ill with HIV/AIDS and has the fear of dying , so how would one support him/her
• Enact a person who is unhappy about his being seropositive and wants to break a relationship or engagement, so how would one counsel him
• Enact a person who needs medical care but does not have the prerequisites of being eligible to receiving them and is refused by the hospital authority, so how would one intervene and support.

The issues that came out of these role enactments are very crucial to survival, handling and dealing with HIV/AIDS. These foremost issues were of prevention and not to harm or infect others ; prepare for death and be realistic in terms of being mentally agile to one fullest and making property will etc. ; highlighting the subconscious hesitance to deal/confront and cope with the above mentioned issues along with the importance of a counselor and support group in addition to the medicines.

The final concluding session was of “LEGAL AWARENESS” taken by Shezad and Santosh from Lawyers Collective. This was a very important session as the participants have been made somewhat aware of the above aspects in the various NA and support meetings they go for, but they were seldom made aware of their legal rights. The three major issues that were brought about were Informed consent; Confidentiality and Discrimination. This session covered links of all the three issues in the realm of self, family friends, hospitals, pre –post testing, residential dwellings and work.

Overall, the workshop was a very fruitful and truly an eye opener for not only the participants but also the staff of Sankalp as it brought out a holistic picture and way to deal with Self Care from its various subtleties of Self and its psyche; Mental and Physical wellbeing with Meditation and spirituality; Risk reduction; Medical and physical health advise; Responsiveness towards self and others through the Role plays and finally legal awareness. It was a very value added two way information sharing workshop which gave an insight into the understanding and practices of the clients related to HIV/AIDS and also the baseline at which workshops or information-activities could be pitched in for future. It dealt with the aspect of Self care in a cocooning way covering each and every facet of it and in future such workshops should be conducted with not only PLWHA but also drug addicts as they could be one of the catalysts in bringing about the mammoth social change that Sankalp is striving towards.