Few people have ever heard of fistula. So when we reach out to people to explain the condition, many of us tend to describe the stereotype of a worst case scenario.
She got married young and not by her own choice. She had a long labor on a dirt floor with no medical support. After losing her baby, she started leaking. The smell disgusted her husband, so he abandoned her. She returned to her parents, but they couldn’t stand her stench either. Left alone with no place to go, this poor woman begged for survival in a living hell worse than death.
There are cases like this. But they are the stereotypical worse case of fistula. “The problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.” This statement by Nigerian author, Chimamanda Ngozi Adichie, epitomizes the problem with simplifying the plight of women with fistula.
Sometimes the baby survives and grows up with an outcast mother. Many times the husband stays and shares the burden of this terrible curse. More often than not families rally to support their injured daughters or sisters. There are even cases where the woman keeps her leaking secret. Severe injuries affect people in a wide variety of ways. We do our best to respectfully represent the lives, challenges, joys and heartbreak of the people we help. Telling their stories is one way we can do this.
But the patient alone is only part of the story. We work in places where there is little incentive to treat fistula. Yet everywhere we go, we meet passionate surgeons treat as many women as they can with very limited resources and at great personal cost. These people are fascinating characters in the story of fistula and too often are mentioned only as an afterthought. We think their growth is perhaps the biggest impact of our work.
The final dimension of the story of fistula is the people who provide the resources to make this work possible. When people first learn about fistula, they are generally shocked. But that quickly translates into resolve. People want to help other people and when they see how much impact their efforts make, donors get addicted. This addiction to fistula tends to grow stronger the more deeply involved a donor becomes in the cause. Our donors have come up with some pretty cool ways to collect funds.
The story of fistula is the story of people. People injured. People helping. People making the world a better place.