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Creating a balanced narrative about women living with fistulae

This is one of the stories from the September 2012 issue of International News. Maggie Bangser lives in Dar es Salaam, Tanzania and was the Founding Executive Director of Women’s Dignity, an organisation working to address fistulae, maternal health and health rights of the poor. In this article, she pleads for a balanced view of ‘the fistula sufferer’ and reminds us to celebrate the dignity, resilience and achievements of women with fistulae.

Use the table below to access other stories in this issue.

Editorial In their own words: 12 stories of vesicovaginal fistulae
The problem of obstetric fistula: a personal view Provision of fistula services and programmes
Update on the FIGO/RCOG and partners competency-based fistula training manual The problem of continuing urinary incontinence after obstetric vesicovaginal surgery
Moving beyond incontinence Vesicovaginal fistulae in Nepal
Vesicovaginal fistula repairs at Aberdeen Women’s Centre in Sierra Leone Vesicovaginal fistulae in Bangladesh
Vesicovaginal fistula repairs in Tanzania transportMYpatient: overcoming the barrier of transport costs
Obstetric fistula surgery in Uganda Journal club

  

Ever since I began working on obstetric fistulae, I have heard and read a particular depiction of women who live with the condition. It typically includes words such as ‘abandoned’, ‘poor little girls’, ‘isolated’ and ‘unable’. The predominant image of a woman living with a fistula is one of utter despair and an inability to carry on with life. There is an acute dissonance between this depiction and the women with fistulae who I have met.

Undoubtedly, many women with fistulae experience serious psychological distress and have extraordinarily difficult lives. In fact, lives that those of us working to support them could not possibly imagine. Visualise waking up one day to find that you are leaking urine and/or faeces uncontrollably. You don’t know why or how this happened or what can possibly be done to stop it. You wonder how you will carry on with daily life. People scorn your presence.

It is bad enough if this happens to a person with the resources to wash herself, buy new clothes and find a doctor to cure the problem. But what if you live three kilometres from the nearest water source, with few clothes, amidst no one who knows why this has happened (but many who have disparaging explanations for it), and certainly no access to good, affordable treatment?

Women with fistulae often live with these realities. But what distinguishes them is not the trauma they have endured; it is their resilience. Underneath the smelly clothes and downcast eyes are women who are determined and capable.

A study conducted in Tanzania by Women’s Dignity and EngenderHealth provides insight into the impacts of fistulae and women’s ways of coping with them.1 The majority of women in the study were married before they sustained fistulae and remained married afterwards. In fact, in several cases, women’s partners continued to stay with them despite pressure from others. This is not to say that some women’s marriages were not affected. Several women reported traumatic and painful endings to their marriages. One woman described how her husband said ‘I can’t live with a woman who rots my mattress with urine’. He threw out all her belongings and left her.

The majority of the women in the study said they isolated themselves from their communities. Interestingly, however, fewer than half of the women mentioned being ridiculed or segregated by community members. Women also said that a major impact of fistulae is economic, which imposed its own kind of psychological and financial stresses.

‘We cannot offer you a job, you smell like urine.’ (Woman from Songea, Tanzania, aged 20)

But the story does not end here. Women with fistulae reported that they wash their clothes and bathe continuously, often despite severe water shortages. They change clothes frequently, use perfume and lotions, and wear padding if they can afford it. They continue to take care of their families. They persevere. While many women with fistulae in Tanzania and other countries have horrific experiences, the ways they cope reflect self-determination. A study of fistulae in nine countries across Africa conducted by EngenderHealth and UNFPA came to the same conclusion.2 Despite the hardships, women with fistulae show a common trait: tremendous courage and resilience.

‘I can take care of myself. I grow my own food, run a fish business and fetch water, fuel wood, and, at some times, look after my health.’ (Woman from Ukerewe, Tanzania, aged 39)

Remarkable progress has been made in the past decade to address the physical and psychological dimensions of fistulae globally. Further progress to reduce these burdens will require at least three steps.

The first is to make high-quality fistula repair services available and affordable. A fistula is usually repairable and, not surprisingly, when a woman is dry her physical and mental health improves markedly. Expanding the number of facilities that provide high-quality care, with sufficient numbers of trained providers and ensuring care is affordable can return a woman’s life to dignity.

The second is to increase awareness about fistulae so that stigma is reduced and more women seek care. The quicker a woman can be repaired, the better. A study in Tanzania on reintegration of women after fistula repair indicates a clear change in community treatment of women with fistulae following radio and educational campaigns about fistulae, in conjunction with successful recruitment and treatment of patients.3

And the third is to increase the use of new technology to improve referrals for treatment. M-PESA (‘pesa’ means ‘money’ in Swahili) is a technological lifeline for many people across Africa, including women in remote locations. The Freedom from Fistula Foundation in Kenya and the Comprehensive Community Based Rehabilitation in Tanzania have taken great strides in reducing the barriers that women with fistulae traditionally face in accessing treatment. Using a combination of mobile banking, public information and free treatment, they have helped make fistula repair a reality for women who were previously excluded from care.

As we work to treat more women with fistulae, we also need to bring greater balance to the narrative we tell about their lives away from a focus on despair, to a story about their resilience. This is important for several reasons.

The way we talk about women with fistulae shapes their experience of fistulae. If we present an image of strength, would health workers, the communities in which these women live and the larger world have different expectations for women with fistulae? Would this image help women with fistulae achieve these positive expectations?

Focusing on the resilience of women with fistulae may give us important insights into how to serve them better. If we focused on their capabilities, would women with fistulae tell us something new about their lives that would help us better meet their needs? Would we design surgical and psychosocial support services differently?

Lastly and most importantly, because while promoting an image of isolated and downtrodden women leaking urine and faeces may raise money, it undermines their dignity. We need a balanced image of women with fistulae that shows what they have endured and what they have achieved. Can we convince donors that this is the image in which they should invest?

Maggie Bangser, Founding Executive Director of Women’s Dignity

References

1. Women’s Dignity and EngenderHealth. Risk and Resilience: Obstetric Fistula in Tanzania. Dar es Salaam: Women's Dignity and EngenderHealth; 2006.

2. EngenderHealth and UNFPA. Obstetric Fistula Needs Assessment Report: Findings from Nine African Countries. New York: EngenderHealth and UNFPA; 2003.

3. Pope R, Bangser M, Harris Requejo J. Restoring dignity: social reintegration after obstetric fistula repair in Ukerewe, Tanzania. Glob Public Health 2011;6:859–73.