Needlessly living with the stigma of HIV

Needlessly living with the stigma of HIV

Woman spent 22 nightmarish years ostracised for a disease she didn't have

NORMAL LIFE AT LAST: Suthida and her family in Sukhothai. (Photos by Jetjaras Na Ranong)
NORMAL LIFE AT LAST: Suthida and her family in Sukhothai. (Photos by Jetjaras Na Ranong)

'It's like I have a new life," Suthida Saengsumart said last week after the Thai Red Cross Aids Research Center confirmed that she is free of HIV. Ms Suthida no longer had to live with fear that people would despise her for having HIV.

In fact, last week's test was not the first time that she was declared HIV-negative.

Video by Jetjaras Na Ranong and Jeerawat Na Thalang


Five years ago, when she was pregnant with her first child, the maternal test showed that she did not have HIV. But the previous testing was done mainly to assure the health of her child.

"After the testing then, people did not believe me. And I myself was not quite certain," the 22-year-old told Bangkok Post Sunday during an interview at her home in Si Satchanalai District in Sukhothai.

With the help of lawyer Songkran Atchariyasap, Ms Suthida last week underwent another blood test before media representatives. After the doctor confirmed she was HIV-free, she cried with jubilation.

"If I walked around telling people, nobody would believe me. I wanted people to know to get the stigma out of my life, to have people in my village know that I was not infected," Ms Suthida said.

Ms Suthida believed she had lived with HIV since she was born. Her father died of Aids and her mother died earlier of systemic lupus erythematosus, an autoimmune disease.

The orphan Suthida had to live with her aunt in a small community in Roi Et where everyone knew everyone.

At the age of six, her school teacher urged her aunt to take Ms Suthida to do a blood test at a hospital in Roi Et. The result was positive. Ms Suthida had to take anti-viral medicine since then every month until five years ago when she had her first child.

Ms Suthida believed she was HIV positive even before she really understood what it was. "I did not know much about HIV back then. But I was old enough to understand that people despised what I had in my body," she said.

"I thought what I had must be very scary. I always had the pictures of how much my dad was going through, the suffering that he had to endure before he died of Aids," she said.

"When I played with another kids, their parents would take their children away. My aunt asked me not to go out and play with others because the parents would complain to her later as to why she let me play with the other children."

People in the northeastern province did not seem to have a good understanding about HIV. Most did not understand the difference between HIV and Aids.

Due to such misunderstanding, Ms Suthida made a couple of friends in school but the rest did not want to share a dining table with her. Once she was kicked out of a locker room because the schoolmates feared the HIV virus would spread to others.

"Once I had an accident in school and my head was bleeding. But the teacher did not take care of me. The teachers told the other kids to stay away from me. I was a child with a bleeding head. But they did not pay attention to what happened to me. They just left me alone. I was watching the other kids running to the teacher," she said with tears welling up while she was recalling the painful memory.

Ms Suthida could not wait to get out of Roi Et. After finishing middle school, she came to Bangkok to work odd jobs, being a golf caddie and a marker girl in a snooker bar.

Ms Suthida said she did not apply for more stable job because she was afraid that her prospective employer would require a blood test.

She was pregnant with the first child with her former husband when she was still a minor at 17. "My child is a blessing. If I had not had the first baby, I would not have known that I am HIV-free all along," she said.

Suthida said she told her first husband from the beginning that she was diagnosed with HIV. "I asked him whether he still wanted to be my boyfriend. He said he was ok with that," she said.

Ms Suthida said they were using protection and that the pregnancy was an accident. "The doctor asked me if I wanted to keep the baby. It's my decision," she said. The doctor told her that the baby would not necessarily carry HIV from the mother.

She decided to keep the baby and underwent maternity care. The maternal checkup and blood test showed a surprise finding. "They told me I did not have HIV," she said.

"When I first heard it, I could not believe it. Because it's always been in my head that I had HIV. And once you get it, it will not go away," she said.

"The test result showed that I am HIV free and I might never have had it. I was confused. If I was never infected, what has happened to my life?" she said.

Since then Ms Suthida stopped taking anti-viral medicine based on the recommendation from the doctor. Ms Suthida later met her second husband who is the owner of the restaurant and karaoke bar that she worked for in Samut Prakan province.

Chatchay Kumruan, the 37-year-old husband, was sitting by her side during the interview. He said he was aware that she was HIV positive when they first met. "But I did not care. I know that HIV is not easily contagious as people wrongly believe," he said.

Nonetheless, he admitted when they started dating, some people in his family were uneasy with Suthida's history of having HIV, even though Ms Suthida later told them that she was tested negative when she had the first child.

The couple now had a two-year-old daughter and moved to settle in Sukhothai a few months ago. Commenting on the result of blood test last week, Mr Chatchay said, "I am happy with her because it is like she has unlocked herself."

Throughout the ordeal, some people lay judgement on her. They asked why she had not been more careful when she let herself get pregnant. Ms Suthida said, "I want to tell them that people with HIV also have a heart. We want to love and be loved," she said.

Ms Suthida and her husband moved to Sukhothai three months ago to start afresh. But Ms Suthida still wanted to prove that she was HIV free. So she went to seek help from lawyer Songkran Atchariyasap.

Last week's test proved once and for all that Suthida instead suffered a HIV misdiagnosis. "I feel like being reborn," she said. "I am happier than people who win the lottery."

Public Health authorities are now probing the HIV misdianogsis and her lawyer is looking at compensation for the damages.

Meanwhile, Suthida is looking forward to visit her hometown with her husband, even though she does not want to settle there. "I want to tell them I was misunderstood all along," she said.

Her husband added, "When we go to her home, let's see how people react. In the past, they might gossip about us. Now, we will get their feedback."

PROOF: Suthida had her blood checked with her lawyer Songkran looking on, left, and the result shows she is HIV-free

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