Imagine feeling ashamed because you perpetually smell of urine or stool. Imagine mourning your stillborn baby – a baby that died because it was stuck in the birth canal and was not delivered by cesarean section in time. Imagine traveling for hours or days to reach a hospital, hoping that a doctor will be able to surgically restore your continence, which is caused by a condition called obstetric fistula. And then imagine that while you wait for your surgery date to come, you are invited to watch short videos telling the stories of women who have endured exactly the same thing as you have.
For fistula patients, who are often isolated and shunned in their local communities, the recognition of not being alone – not being the only one – can be profoundly comforting. As one patient treated at Kitovu Mission Hospital in Uganda put it, “before watching these women give their testimonies, I did not believe that my condition would be treated. At least now I have hope that I will be normal again.”
The video testimonies were produced as part of “Learn From My Story: Women Confront Fistula in Rural Uganda,” a 2007 participatory media collaboration between EngenderHealth, the Center for Digital Storytelling’s Silence Speaks Program, and St. Joseph’s Hospital in Kitovu, Masaka District, Uganda. The videos are being shown to women awaiting fistula surgery, women recovering postoperatively, and women seeking other maternal and child health services. Through the USAID-funded Fistula Care project, EngenderHealth also developed a discussion guide to accompany the videos. Counselors can use the videos to prompt discussion and answer patients’ questions.
Health workers across Uganda attest that the videos have helped to allay women’s fears and dispel myths about fistula repair surgery. Pauline Namale, a fistula counselor in Kitovu, observed that “clients who watched the videos asked fewer questions during individual counseling sessions, since most of their concerns and worries were already addressed.” Shorter counseling sessions meant that the overstretched caregivers had more time to attend to the many needs of women awaiting surgery.
Fistula patients recognize and appreciate the traditional music and Ugandan languages used in the videos. According to nurse Isaac Singasi, every time they are shown in Kagando Hospital’s client waiting room, “all of the women with fistula and their caregivers would be listening attentively, and the environment would be very quiet.”
While particularly powerful for women viewers suffering from fistula, the videos are also being screened beyond facility walls. Trainers have shown them to midwifery interns and medical students, to orient them to fistula prevention and treatment. Internet audiences are learning about fistula by watching the videos online – the stories have been viewed over 22,000 times on EngenderHealth’s YouTube channel. They have also been shared at advocacy meetings with members of the Ugandan parliament, maternal health research dissemination meetings, and in briefings with journalists, as a way to highlight the plight of women affected by fistula.
In each of the eleven videos, women who have experienced obstetric fistula recount hardships and celebrate achievements related to their daily struggles with pregnancy, loss, and relationships, as well as their search for safety, acceptance, and dignity. One particularly moving story is told by Federesi, who recounts how she used to pad herself and avoid drinking so that others would not know that she leaked urine. She suffered for 15 years before undergoing surgery and having her dignity restored.