Twelve-year-old Shadi has spent her childhood alone. She is never invited to tea parties and her schoolmates won’t share their snacks. On a good day, she rides her bicycle near the isolated home she shares with her mother, but she is always by herself.
Shadil is beautiful and healthy. The distance she keeps from others is not by choice. Those around her, in the Kurdish city of Bokan, Iran, know her father died from AIDS and that her mother is HIV-positive and she is shunned because of their illnesses.
In the decade that Shadil and her mother have spent alienated from society, the prevalence of AIDS and HIV infections in Iran has skyrocketed. In 2013, Health Minister Hasan Hashemi estimated the number of AIDS patients had increased 900 percent over the previous 11 years.
The spike in AIDS/HIV cases has not led to the Iranian public’s increased understanding of the virus. Speaking in World AIDS Day two years ago, Hashemi, expressed serious concern about the country’s approach to HIV victims and criticized the country’s social support and education programs.
“Iranian people are frightened of AIDS because of misinformation and unscientific claims. This is why it remains a taboo," Hashemi has explained.
A research paper conducted in 2013 by leading Iranian health officials found 22,727 people living with AIDS, but the actual number is estimated to be closer than 100,000. Kamiar Alei, a Harvard-educated doctor and HIV pioneer who was jailed by the Iranian government, estimated that 70 percent of those who have HIV don’t know that are infected.
“My husband died 10 years ago. One day he came home feeling sick with symptoms of the flu or something like that. It didn’t make us worried, but a week later we buried him,” said Shadil’s mother Mahbubeh, 38, in a Skype conversation with Rudaw’s Arina Moradi.
Postmortem examinations of Mahbubeh’s husband showed that the HIV virus has destroyed his immune system. Doctors soon found that Mahbubeh is HIV positive, but Shadil, who was 2 years old at the time, had no sign of her parents’ disease.
“I never knew how he got HIV. It is the biggest question of my entire life. Sometimes I am so angry at him, especially because his family blamed me for their son’s death,” Mahbubeh said, swiping angrily at her tears while dark-eyed Shadi stared at her mother in silence and played with her own curly hair.
Since then, Mahbubeh and Shadil, who requested only their first names be used to protect their identities, have been largely excluded from life in their the small city. As the Iranian study found, being associated with the virus exposes people to “the negative attitude of society, discrimination and stigmatization.”
Mahbubeh and her daughter, for just one example, are not included in the traditional afternoon tea parties given for women and children in their neighborhood.
“We have never been invited to any parties. My daughter is HIV-negative, but she has her fair share of humiliation and loneliness because of us,” Mahbubeh said.
At this point, Shadil broke her silence and said in a soft, sad voice: “Once at school, I wanted to share a cookie with Narmin—the girl next door—but she freaked out and refused to even touch the cookie.”
The problems have not all been social. Mahbubeh has lost her job three times when employers learned she was HIV positive. Once, when she was working as a medical assistant at a woman’s clinic, even the doctor asked her to leave.
“She was a doctor. She supposed to be different than other people. But when she figured out that I am HIV positive, she said ‘I am so sorry. I know you are not harming anyone. But I must care about the clinic’s reputation.’ I left the place right after,” said Mahbubeh, who is now working as housekeeper. She said her new boss doesn’t know about her sickness.
For now, Mahbubeh’s health is stable. She takes anti-retroviral treatment and does her best to support Shadil. Her local physician, Dr Alireza Maroofi, is more concerned for Mahbubeh’s mental health amid a culture that has isolated and embarrassed her.
Maroofi believes the Iranian government should launch awareness programs to overcome the country’s unhealthy taboo against HIV.
“I am giving her medicine to improve her physical strength. Who will give Mahbubeh and her daughter the strength to fight ignorance, misunderstanding and loneliness?”
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Iran’s Hidden Lives is part of a Rudaw series on Iran.
Shadil is beautiful and healthy. The distance she keeps from others is not by choice. Those around her, in the Kurdish city of Bokan, Iran, know her father died from AIDS and that her mother is HIV-positive and she is shunned because of their illnesses.
In the decade that Shadil and her mother have spent alienated from society, the prevalence of AIDS and HIV infections in Iran has skyrocketed. In 2013, Health Minister Hasan Hashemi estimated the number of AIDS patients had increased 900 percent over the previous 11 years.
The spike in AIDS/HIV cases has not led to the Iranian public’s increased understanding of the virus. Speaking in World AIDS Day two years ago, Hashemi, expressed serious concern about the country’s approach to HIV victims and criticized the country’s social support and education programs.
“Iranian people are frightened of AIDS because of misinformation and unscientific claims. This is why it remains a taboo," Hashemi has explained.
A research paper conducted in 2013 by leading Iranian health officials found 22,727 people living with AIDS, but the actual number is estimated to be closer than 100,000. Kamiar Alei, a Harvard-educated doctor and HIV pioneer who was jailed by the Iranian government, estimated that 70 percent of those who have HIV don’t know that are infected.
“My husband died 10 years ago. One day he came home feeling sick with symptoms of the flu or something like that. It didn’t make us worried, but a week later we buried him,” said Shadil’s mother Mahbubeh, 38, in a Skype conversation with Rudaw’s Arina Moradi.
Postmortem examinations of Mahbubeh’s husband showed that the HIV virus has destroyed his immune system. Doctors soon found that Mahbubeh is HIV positive, but Shadil, who was 2 years old at the time, had no sign of her parents’ disease.
“I never knew how he got HIV. It is the biggest question of my entire life. Sometimes I am so angry at him, especially because his family blamed me for their son’s death,” Mahbubeh said, swiping angrily at her tears while dark-eyed Shadi stared at her mother in silence and played with her own curly hair.
Since then, Mahbubeh and Shadil, who requested only their first names be used to protect their identities, have been largely excluded from life in their the small city. As the Iranian study found, being associated with the virus exposes people to “the negative attitude of society, discrimination and stigmatization.”
Mahbubeh and her daughter, for just one example, are not included in the traditional afternoon tea parties given for women and children in their neighborhood.
“We have never been invited to any parties. My daughter is HIV-negative, but she has her fair share of humiliation and loneliness because of us,” Mahbubeh said.
At this point, Shadil broke her silence and said in a soft, sad voice: “Once at school, I wanted to share a cookie with Narmin—the girl next door—but she freaked out and refused to even touch the cookie.”
The problems have not all been social. Mahbubeh has lost her job three times when employers learned she was HIV positive. Once, when she was working as a medical assistant at a woman’s clinic, even the doctor asked her to leave.
“She was a doctor. She supposed to be different than other people. But when she figured out that I am HIV positive, she said ‘I am so sorry. I know you are not harming anyone. But I must care about the clinic’s reputation.’ I left the place right after,” said Mahbubeh, who is now working as housekeeper. She said her new boss doesn’t know about her sickness.
For now, Mahbubeh’s health is stable. She takes anti-retroviral treatment and does her best to support Shadil. Her local physician, Dr Alireza Maroofi, is more concerned for Mahbubeh’s mental health amid a culture that has isolated and embarrassed her.
Maroofi believes the Iranian government should launch awareness programs to overcome the country’s unhealthy taboo against HIV.
“I am giving her medicine to improve her physical strength. Who will give Mahbubeh and her daughter the strength to fight ignorance, misunderstanding and loneliness?”
--------
Iran’s Hidden Lives is part of a Rudaw series on Iran.
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