Peshawar: Shabnam had had diarrhea that would not go even with repeated medication. Her husband had left for Saudi Arabia soon after wedding and she had been living with her in-laws. They took her to doctors who on failing to treat her conditions only advised stronger medication.
The doctors advised that she should be tested for hepatitis C but even that didn’t help with a diagnosis. It was only after they had exhausted all options that her doctor Shiraz suggested that she should test for HIV. The tests turned out positive. Shabnam had HIV.
“It was the end of the world for me,” said Shabnam, not her real name. “More than the fear of death, I could see the social consequences of my condition.” The moment she came to know that she had HIV infection, she knew it was the end of life as she knew it because, according to her, the only cause of such HIV/AIDS is unsafe sex or sexual promiscuity.
Naturally, then, she did not tell anyone about the disease. She asked her husband she wanted to join a non-government organization working for welfare of HIV/AIDs patients. “I would discuss with my family members the condition of HIV/AIDS patients. I was preparing grounds to reveal my own,” said Shabnam.
Shabnam, who was 30 years old when she was diagnosed with HIV/Aids, said she would take her mother, sisters and other relatives to awareness sessions so that they knew there were several other reasons for HIV/AIDS infection.
After attending a number of sessions, her mother got suspicious and questioned her motives for taking her to these sessions. Shabnam said her mother asked her if there was something wrong with her. “My mother said ‘why do you always take us to attend these sessions since we have nothing to do with it’,” said Shabnam.
She said her mother was the first one to know and she was very understanding. Attending the sessions had made her sympathetic to the condition of her daughter and that of other HIV/AIDS patients. She would discuss things with her husband whenever he called home, she said, adding that she wanted to prepare her husband also, knowing that even after all a time, no one would accept her as part of the family if they come to know about it.
A 2012 study on risk factors among HIV/AIDS patient found out that the “sexual route of transmission was the commonest cause followed by injection use from non-qualified healthcare providers. A certain percentage of male subjects had acquired infection during their stay in Middle-East countries”
The study said HIV prevalence was increasing among injection drug users (IDUs) and their sexual contacts. Male and transgender sex workers (MSWs) were also a contributing factor. “For these risk factors, Pakistan appears to be following the ‘Asian Epidemic Model’. On the other hand, majority of the patients attending HIV clinics are expatriated migrant workers and their spouses.”
At the same time, says Shabnam, she contemplated suicide, even considered painless options because once her condition was public knowledge, “people would hate me for bringing stigma and dishonor to my family as well as my in-laws.”
“Ghairat (honour) was the only thing I would think about since you cannot survive in a society where there is no acceptance of patients with HIV/AIDs and when people believe the only reason for infection is extra-marital sex,” she said, explaining how difficult it was for a woman to live with the disease.
“Often I would lie on bed planning to commit suicide the next day,” said Shabnam. However, what kept her from killing herself was the thought that suicide was a stigma and would raise questions about why a newlywed committed suicide days after her marriage.
She said she could neither live, nor end her life. She feared honour killing because she lived with a stigma in a male dominant society.
Shabnam said she would always ask her husband not to return home as she did not want children for the reason that the disease could transfer to her husband and children.
“Whenever he would talk about returning to Pakistan, I would pray he stays back,” she said.
“I was worried about divorce as no one was going to believe she was not involved in immoral activities,” she informed adding people thought only illegal sex caused AIDs.
“The primary source of HIV infection in Khyber Pakhtunkhwa is needle-sharing among drug users,” said Dr. Atta Ullah, Deputy Director HIV/AIDS programme, Khyber Pakhtunkhwa, adding that a majority of people in Pakistan believed that AIDS happened as a result of sexual intercourse only. “A needle shared with an HIV infected person means the entire group that uses the needle is at risk.”
Nearly 30 percent of the registered patients, said Dr Atta Ullah, were infected due to sharing syringes while using drugs. Nearly 7.2 percent caught the disease due to sexual relations with men and transgender.
Shabnam’s husband returned from Saudi Arabia after 18months and on their first night together, she placed her medical reports before him, saying: “This is true. Please if you want to marry, go ahead but don’t break up with me.”
Shabnam need not have worried, though. Contrary to her fears, Jalal – not his real name – was very supportive. “He said ‘you have been infected but we can live with it. I, as your husband, ask you to go and save lives of others like him’,” said Shabnam, quoting her husband.
A report by the Aids Data Hub says that among women, many are at risk by simply being married to either intravenous drug users or HIV positive men. “Most are unaware of their risks and lack empowerment or skills to negotiate for safer sex practices,” says the report. “Their risk is amplified by their limited access to information or VCT due to stigma and societal pressures, and lack of mobility to seek care on their own. Most HIV positive patients registered at HIV centers are from conservative households and often do not disclose their HIV status to their wives or refuse to bring their spouses for HIV services, despite counselling.”
Shabnam said her husband never avoided physical relations with her saying if HIV hadn’t harmed her, it would him. She knew it was risky behavior but couldn’t deny herself to her husband. After nine months, Shabnam gave birth to a baby girl and astonishingly, she was completely normal.
She says the baby was normal but she was worried about her husband. She forced him to have medical tests and he tested negative for HIV/AIDS. One of the reasons for her concern for her husband was that a huge number of patients with HIV/AIDs got infected in the Gulf countries.
“The lab results further strengthened my belief that sex was not the only reason for HIV/AIDS infection,” said Shabnam.
Data made available by the Provincial Health Department shows that the total number of HIV/AIDS cases in Khyber-Pakhtunkhwa is 16,000 with only 1,816 patients receiving medical assistance at established centres – which shows that 90 percent of HIV positive people have not consulted doctors yet.
Dr. Aysha Qaisar, coordinator Family Care Centre for Prevention of AIDS at Hayatabad Medical Complex said timely therapy benefited patients by not just improving the health of individuals but also lowering their viral load, reducing the risk that they would spread HIV to others and increasing the life-span of patients.
Dr. Qaisar said the social stigma associated with HIV/AIDS caused patients to remain silent and not seek treatment. Sometimes even doctors were reluctant to socialise with patients, she said, ignoring them and neglecting their health needs. This tradition, she said, had changed now that there was awareness about the disease.
“Awareness campaigns need to be conducted for people to know the disease is not transmitted by shaking hands or having meals with a patient, but because of carelessness and ignorance,” she said.
Shabnam says she has two daughters with Jalal and both are normal. “If you want kids and take medicines, you will have healthy kids,” she said. “Even if you are feeding, you must give medicines to your kids since there was only 1% chance of the disease’ transmission.”
Shabnam is now works as a counselor for HIV/AIDs patients including male and female.
She says: “I always tell my clients to live life just like I have lived. I have two daughters and both living a normal life but yes, my in-laws still don’t know I am HIV/AIDs positive.”