GARANTÍAS O LEY DE PASO

Participants feel personally stigmatised because of their HIV history and stigmatisation from other people in the presence of health personnel working in the field of HIV, listening to people talking about HIV and through talking with other people about HIV including any other diseases with symptoms similar to HIV. All these things make participants feel devalued in society. They feel stigma from within based on their life before HIV infection. This is related to societal norms and values as they think they could have controlled their personal behaviour which led to HIV infection if they had tried to have protected sex or using sterilised syringes for drug use. They recall their previous histories of being HIV infected and within themselves feel shame and look down on themselves.

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[HIV] is through sexual contact. I was a drunkard and had such friends going to restaurants. I have not gone anywhere else [a foreign country] from my place. I never take cigarettes but took alcoholic…PLHIV are assumed to be low level people and doing low level work [e.g.,sex with multiple partners, irrespective of HIV status]. It seems to me that people may think that PLHIV who are poor did not work well previously.

– Rajesh, Male

Apart from self-stigma, participants expressed feeling other people backbite and gossip about them when they are in contact with health personnel working in the field of HIV and even if they listen to others talking about HIV during the course of daily life. If someone asks about HIV in a general sense, they feel ashamed. Furthermore, this significantly humiliates them in their lives. In regard to this, Pushpa expresses her experiences in this way:

I saw people gossiping, backbiting, and pointing out telling- look that woman and man have HIV … Someone might have suspected me of being HIV positive. It is because people have seen me talking with health personnel working for the HIV infected people… My heart aches when people say indirectly that I have HIV infection.

– Pushpa, Female

Seeing and listening to stories of HIV stigmatization and discrimination which has happened to others makes participants terribly fearful. The stories of seeing other PLHIV being put in an isolated place in a cattle shed (Mamata), not being given food enough to eat by their family members at home (Gita), people telling others in their

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society not to sit and eat together with such HIV-infected persons (Suku); such stories made them ache in their hearts that similar stories may happen to them once people know about their HIV. Similarly upsetting is listening to stories that HIV is a life- threatening virus and that people contracting HIV have their skin turn dark and their body becomes very skinny showing their skeleton (Buddha). In addition, some PLHIV suicide after experiencing hatred at home and in wider society (Gita). All such stories have made them extremely fearful of what may happen in the near future.

I had seen mistreatment and discrimination done to a sister living in a village. She was also my relative. Her husband used to work in India. First, her husband was identified as HIV positive. Thereafter her blood was checked while getting sick and she came to know that she was also an HIV infected. Then, her family members put her at an isolated place, at a cattle shed. They did not give her permission to enter the home. Because she was sick, if anybody brought her fruits they did not give to her. Her parental family members used to come there to wash her dress, because at home nobody was doing it. I was so small at that time. Even if she was sick, she had to bring grass/fodder for cattle from homeland or forests. That’s why my parents used to send someone to cut grass and I used to go there to help her sometimes. One day I cut my finger while cutting grass. That scratch is still on my finger. When I see this scratch, I recall my sister [the then HIV positive] still now and the event of that time makes me scared of HIV. Doctor had also suggested me to be careful with PLHIV as it can be transmitted to anyone at the time of my finger treatment.

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Anu, a female, heard of a story related to HIV as a life-threatening “disease” that caused her heart to ache when thinking society would discriminate against her once people knew of her HIV.

I had heard that a young boy was identified as HIV positive at [a] hospital. There was a rumour that he would live only for 10 years. There was also a rumour that he would get pimples and injuries on his body very quickly. It is not good to stay close to persons with HIV and it can be transmitted through the mosquito bite as well. My neighbours used to gossip about this. At that moment, many people were saying the same thing, that HIV is a life threatening disease. After I had HIV I worried that society would know about my health condition and they would discriminate against me.

– Anu, Female

Participants stigmatised themselves from socio-cultural perspectives, especially in the belief of luck written by birth. Pratima shared her experiences on her poor luck in this way:

I stigmatize myself in my heart because of my poor luck. Though I know that it is not good to blame myself but such foolish things go through my mind. This leads to weakness. I am wondering if the neighbours know about my [HIV] status. If some people do talk about such things, I think they are pointing out my status though it might not necessarily be the case. If someone treats me differently from before, I will be wondering if he/she knows about my status.

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A similar statement was also made by Durga in regard to both her and her son’s HIV status due to the husband’s family’s fault (i.e., the previous generation):

My previous generation has done some wrong in their earlier life. My child [her son] got HIV without doing any wrong. Even I have not done any wrong in this life [e.g., extramarital sexual relations], I have also contracted HIV. People say that you are now suffering from this as your ancestors did sinful things in their own lives and the reactions of those people are this disease [HIV] on you. I think this may be true, that is why, and we are suffering from this disease without doing any mistake in our lives. Even my child is now suffering from this disease. That is all related to the sins of our ancestors.

– Durga, Female