Things that make you to Think
A Bangladeshi HIV positive baby, who has now grown into adulthood, tells the tale of stigma, suffering, determination and courage that has been her life.
Speaking on condition of anonymity, she dreams of the day she can show her face and say her name in dignity.
“I am HIV positive. Please accept me,” an 18 year-old teenage girl from Chittagong said to this reporter.
She asked to remain anonymous but shared her story and her greatest personal hopes with the Dhaka Tribune on Saturday morning, two days ahead of World AIDS Day.
Alo – not her real name – passed her Higher Secondary Certificate exam this year from the Arts group and is now waiting to start her tertiary level education.
She was infected with HIV in the womb. Her father, who infected her mother, died from AIDS in 2002 when she was 6.
As far as she can remember, her father died from a severe sickness. She remembers that he could not work, but no one then knew that he had AIDS.
“We learned that my father was HIV positive when my mother fell severely ill the year after he died. We took my mother to many hospitals but no one could cure her. Later we found out that she had AIDS too,” Alo said.
In 2003, Alo lost her mother and she, together with her two elder sisters, were asked to be tested for HIV.
The test revealed that Alo was HIV positive but her two sisters were not. Since then, Alo has been getting medical treatment for the disease.
“I did not know anything about HIV at the time. But I can remember that my bitter life started with that test result.
“Even my two sisters did not keep me with them on the bed. They placed me on the floor while they slept on the bed,” Alo recalled as tears filled her eyes.
“I can still remember that my utensils, clothes and other personal belongings were a different colour so as to be easily recognisable,” she said.
Alo continues: “When I went to my mother’s sister’s house I was not permitted to sit on the sofa with my relatives. I was so hurt that I was not allowed to play with my cousins and the other children.”
“I was given food on a special plate and was only permitted to sit on the floor. It seemed as though everyone hated me and considered me a burden,” she added.
“Everyone told me to stay away because I had a disease that could kill them.
Her family shooed her away, telling her she had a disease that could kill them, without a care for the fact that the disease was killing her.
But it seemed their treatment of her and her condition, however bitter, had not killed her spirit.
After slow exposure to the facts about HIV/AIDS, her two sisters and some relatives came to understand that it is not a contagious disease in the typical sense. They now understand how it is transmitted.
Alo herself says she now understands that she need not bear any stigma for her HIV positive status.
But although her two sisters and some relatives are now more supportive of her, she says she still feels alone at the end of the day.
Alo has hidden her HIV status all of these years. Her sisters, all that survives of her nuclear family, and a handful of relatives know her condition.
To the rest of the world, this part of her is invisible, she says, because of intolerance.
She knows she would not be accepted by society, her school or her peers if they knew the truth.
“I do not make any friends and I do not let people become close to me because it makes me sad to do so,” she said, offering a glimpse into her deeply personal feelings.
She works as a tutor to make extra money to cover her personal expenses.
Her neighbours, relatives, friends and teachers do not know about her HIV status.
I could never tell anyone about my disease because no one would understand me. They would misjudge me.
Our society is not friendly towards us, she said.
She starts her day with morning prayers and recitations from the Qur’an and goes to sleep after her prayer at night. The day starts and ends with this unshakeable sense of stigma, of being unacceptable, she said.
“I do not become too close to my sister’s child. I never kiss the child although I love the child very much and the child likes me as well,” she said.
When asked why she doesn’t express her affection for the child, Alo replied: “Yes, I know it will not harm the child but I do not want to take a chance. I do not want to be the reason for anyone getting sick.”
“I treat the child as my own,” she said.
Alo takes anti-retroviral medicines twice a day everyday. She must take the medicines right on time for them to work properly. She eats nutritious food when they can afford it.
Alo shared her one great hope with the Dhaka Tribune and prays to God that her wish comes true.
She wants a job of her own and a worthy husband who is also HIV positive.
“Every other girl in my family married long before they turned 18. There is some social pressure for me to marry,” she said.
“But how can I make people understand that I cannot get married. I understand my sisters have a lot of trouble with me in this society. That is why I want a job by which I can be financially independent,” she said with a bold voice.
“It is very tough to remain unmarried. I want a husband who is also living with HIV. Only he will be able to understand me.”
Alo hopes one day she can reveal her identity with a photograph, when there will be no social stigma or discrimination. She hopes then people will be able to accept her like any other human being.
“I want to come out of my dark and lonely world.”
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