For the 300,000 new patients of tuberculosis (TB) in Pakistan every year, finding a semblance of normalcy is a challenge. The Tasweer-e-Zindagi project from Interactive Research and Development attempts to change that, by giving them a voice and space to reduce stigmas.
Patients were given cameras to document how the condition affected their lives and those of their families.
“Before this project I had no hope that anyone cared about me or would give me hope,” said Saima Arshad, whose photo went on display at the exhibition at Indus Hospital on Saturday. “I was completely hopeless. People used to stay away from me because of my sickness and everyone’s attitudes towards me changed. This project has helped me respect my own life.”
A caption by Shabana-Aas-Mohammad sums up what life is like for patients. “No one comes near me. If someone does approach me, I feel happy that someone cares about me,” she said. “People stay away from me for different reasons - poverty, my disease or because they think they will have to help us. It’s just me, my room and loneliness.”
Loneliness and alienation from society was an issue that most patients complained of. Zainad said everyone in her neighbourhood shunned her, except for her husband. “If I didn’t stand by her side then who else would?” said Mohammad Nazir.
The ten-month project was first considered to be rather strange. “After they tried it, it became cathartic for them,” pointed out one of the project directors, Sana Sajun. “They had an avenue to vent, which they didn’t have before.”
Many of the patients who were part of the programme have been cured and were being treated by the Indus Hospital, a free hospital founded in 2007 with the aim of providing state-of-the-art facilities for the underprivileged.
The project also comprises a call for action that has six major objectives: to disseminate correct information about TB among the general population, health practitioners and people affected by it, create a supportive environment where people are empowered and not stigmatised, recognise and counter the social, emotional and financial impacts of TB, and recognise the need to provide communities with basic amenities conducive to good health.
One of the participants, Mohammad Hanif, contracted tuberculosis. His two sons and then his wife ended up getting it as well. His wife and a son have been cured and Hanif said he is satisfied with their recovery. He says the support of this project has given him the strength to battle the disease.
Stigmas and misconceptions about tuberculosis complicate treatment. A World Health Organisation report states that in 2010, 58,000 lives were lost from it. Pakistan ranks eighth among the highest burden countries for the disease.
Hanif tersely explains what needs to be done. “We have to learn not to hate the patient, but hate the disease.”
Published in The Express Tribune, January 15th, 2012.
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Great story. Thank you Shaheryar for taking the time to attend the event. Your support means a lot to TB patients and all the people affected by the disease in Pakistan.