Living Positively in the Shadow of HIV

Daw Su Su lives in a small, neatly kept wooden house with a tin roof on the outskirts of Pyin Oo Lwin, Mandalay Region. Her home sits on short stilts above the hard-packed dirt road past her front door. When we visit, the neighborhood is quiet, but the houses are crowded together.

Daw Su Su welcomes us with a warm smile, and we sit on the floor to talk, as is traditional in Myanmar culture. She wears a blue cardigan and a colorfully patterned ‘htamein’ skirt. She pours coffee and tea and offers an array of Myanmar snacks, including tea leaf salad.

Daw Su Su is in her early fifties but looks much younger. She has kind eyes and a quiet charm that puts us immediately at ease. Originally from Mandalay, she came to Pyin Oo Lwin with her husband in 1989 after he was posted there with his job. Daw Su Su has four children. Three of them are already grown up, while her youngest, a daughter of 13, still lives at home.

Daw Su Su and her husband were diagnosed as HIV-positive five years ago. She is not sure how they became infected. Her husband tragically died of complications related to HIV just one month before our meeting. Daw Su Su is stoic as she talks about him, with just a flicker of grief passing across her face.

Daw Su Su receives support through the CPI partner organization New Life. She came to New Life for help when she was diagnosed with HIV, as she didn’t know where to turn.
Founded and run by HIV-positive community members, New Life provides counseling and support to 800 HIV-positive people in communities in and around Pyin Oo Lwin.

After Daw Su Su received her diagnosis, New Life organized peer-to-peer counseling to help her come to terms with her health status. The organization supported her in seeking medical care and starting anti-retroviral treatment (now available for free through the Ministry of Health and Sports National AIDS Program) and continues to help her buy multivitamins and antibiotics that help prevent and treat opportunistic infections.

Due to the stigma that surrounds HIV, Daw Su Su keeps her health status a secret from her friends and family. Even her children are not aware of her situation. This is why organizations like New Life are so important – providing a lifeline of information and support for people living with HIV in Myanmar.

Daw Su Su worries about her children getting HIV. Cultural sensitivities mean that young people in Myanmar grow up with little or no exposure to sex education. They have a limited understanding of the risks of sexually transmitted infections, how to prevent them, and the treatment options if an infection occurs.

As our conversation draws to a close, Daw Su Su talks about her hopes. “I wish every HIV-positive person in Myanmar receives the help and understanding they need to live full and healthy lives. We don’t want to have to live in the shadows.”