“In 2006 when there was very minimal awareness of HIV in the country, I went to have my routine checkup for my pregnancy and was told that I had HIV. Everyone at the time referred to it as the ‘untreatable disease of AIDS’. As one may imagine, I was scared. Thankfully, I received proper counseling from health workers, and they helped me follow a plan so that my unborn child would not be infected. The mother must take medication for HIV and compulsorily go to the hospital for child-delivery. After delivery, the baby is also given medication and tested after two years. They told me that a baby has a 5-10% chance of transmission during pregnancy, 10-15% during birth, and 25-30% through breastfeeding. I have four kids. Thankfully all of them are HIV-negative. The three kids born after my diagnosis were never breastfed. I only fed them lactogen that the hospital provided us till the baby turned one.

In 2011 on World AIDS day, a few HIV-positive people including my husband and I came forward on TV. Initially when my husband told me about this plan, I was strictly against it. I even told him that I wanted to separate if he went through with it. However, around November that year, I realized that if I came forward with my story I would be able to share my experience as an uneducated woman diagnosed with a scary disease that people did not know much about. I believed that it might help people going through similar situations and ease the stigma around HIV. In the following years, awareness has increased and stigma, although prevalent, has been reduced.

After coming out on TV, I was evidently discriminated against. Everyone knew about my status as an HIV patient and when I started weaving, an activity I was interested in, with a group of people in Changzamtog I was told to leave in just two weeks. The owner told my sister that she could stay but complaints flew in from customers just because I was working there. They thought that if I pricked my hand and my blood stained the clothes I was weaving, anyone who touched it would be infected, which is not true.

However, the situation has improved slightly over the years and Lhaksam has played a huge role in it. Before, people did not know the difference between HIV and AIDS. But now most know that HIV is not transmitted through mere physical or verbal contact or even from sharing bathrooms, although a lot of silly notions still exist. There is a center for Lhaksam at Genekha where we host HIV positive people who don’t have means to earn a livelihood or are from very remote places where they cannot avail medication and treatment. We give them work here at the center. There are about 30 people right now, including around 12 kids. Some of these kids are living with HIV and others are simply here with their parents. There is a school close by so they go there. Most of them do not complain about discrimination at school but we have had instances of these kids finding it difficult to make friends because of where they come from.

Getting sick is never fun, even when it is something as mild as the flu. HIV is a lifelong condition and one that requires a lot of care, medication and will power. I want to urge everyone to learn all preventative measures. We can never tell who has HIV, so it is always important to be careful and practice safe sex.”


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