By Donald Sairem
Stigma against People Living with HIV/AIDS (PLHIV) has not completely disappeared from the society. It still looms large in spite of awareness drive conducted at various levels by NGO workers and other allied groups.
Nevertheless, with the right support, few have risen up against all odds to become a role model for the people suffering the same fate.
“I do not want my stories to be told by using a fictitious name. The day we stop the self-stigma and looking down on ourselves for being a PLHIV, we can start living our life with dignity just like any other human being. By concealing my name, I am stigmatising myself.”
These are the words of Kangabam Anandi, a PLHIV who has been helping fellow PLHIV receive the right support and care. She spoke to the Imphal Free Press in an exclusive chat.
She is the secretary of Imphal East Network for Positive People, a branch of Manipur Network for Positive People (MNP+).
Anandi has been on antiretroviral therapy (ART) since 2004. Widowed at the age of 21 in 2001, she is now 40 and lives with her second husband and two daughters at their Brahmapur Chungkham Leikai Imphal residence.
Even though she contracted the virus from her first husband, Anandi is also the living example of how PLHIV can enjoy a married life without transmitting the infection to their spouse or biological children.
As narrated by her, their 16-year-old first daughter was born to her first husband. “When we learnt that we are HIV positive, we took precautions during birth of our child using post-exposure prophylaxis (PEP), which is taking antiretroviral medicines (ART) after being potentially exposed to HIV to prevent becoming infected. Repeated tests have confirmed my daughter HIV negative,” she said.
“If only my first husband had released about the self-stigma, he could have survived much longer by seeking help and support. This thought compelled me to work for the PLHIV and I started working with MNP+ from 2004, where my second husband had worked as a caretaker,” she recounted.
Anandi further told that her second husband, who is well aware of her status being a PLHIV and a widow with a daughter, proposed her of marrying and settling together. “I accepted after much thought and we eloped in 2006,” she narrated while adding that the loukhatpa (acceptance) ceremony was also held the year itself.
She continued that her second husband and the younger daughter born to the second husband are also HIV negative. “We had utilised the Prevention of Parents to Child Transmission (PPTCT) programme and yes, I am a living example that PLHIV can enjoy a married life without spreading the disease to spouse or child. No matter what, I am willing to nurture my two daughters to become self-reliant women. Our elder daughter says she wants to study computer engineering. I will extend every possible support in her endeavour,” she asserted with pride.
Recounting an instance of stigma, she said she once stormed out of a dentist’s room after the dentist refused to scan her teeth by using instruments. “I had identified myself as a PLHIV for him to take precautions, but he instead he was indifferent. Such apathetic treatment will discourage PLHIV to come up openly,” she said.
Apart from being a secretary of the IE network, Anandi spends spare time doing embroidery and also worked as a ‘Pala singer’ during marriage season. She said she started singing around three years back as an escape to all the stress arising out of discrimination against PLHIV.
She further stressed that support group meeting, capacity building programmes and support from families are crucial to arrest the stigma against PLHIV. She also urged the government and its agencies to make ART available to the PLHIV on time and to take up capacity building programmes from time to time.
With support from various quarters, Anandi expressed hope that PLHIV especially women and children queuing in ART centres will pull down their veil one day.