Background
A fistula is an abnormal opening between a woman's vagina and bladder and/or rectum through which urine and/or faeces continually leak. The global prevalence of fistula is not known but an estimated 2–3 million women are living with a genital fistula, with an additional 50,000–100,000 new cases per year. However, this is thought to be an overestimate and the prevalence and incidence may be low. In Uganda, two percent of women 15–49 years old have experienced symptoms of a genital fistula. Most genital fistulas occur after a difficult childbirth or its management and are, hence, termed obstetric fistulas. An obstetric fistula is a public health problem that primarily affects women in low-income countries especially in sub Saharan Africa and Asia. Obstetric fistulas were once common but are now virtually unheard of in Europe and America. Most obstetric fistulas occur after prolonged and neglected obstructed labour. In most of these cases, the baby dies during the labour process, and the woman is left with urinary and/or faecal incontinence, having to bear the sadness of the stillbirth and often abandoned by her husband and society.
Irrespective of cause, urinary incontinence impacts several aspects of the affected woman's life, including physical, psychosocial and economic wellbeing. Women with incontinence due to a fistula are equally affected and live a stigmatised life with social, economic, psychological, reproductive and sexual repercussions, the extent of which varies from one setting to another. An evaluation of the UNFPA Uganda Country Programme found that women living with a fistula were either too ashamed to leave their homes, were rejected by their families and community members, or were stopped from working. In Ethiopia, shame, embarrassment and fear of discrimination led to huge efforts by affected women to hide the leakage. The women who were unable to hide the leakage suffered humiliating comments and discriminatory behaviour, sometimes leading to divorce. In Tanzanian, some women with a fistula had separated from their husbands due to their inability to fulfil marital roles and those who were not divorced had to live in separate houses or rooms. The failure to control urine and/or faeces, maintain marriages, bear children or participate in social activities made women with a fistula lose their sense of identity as women, wives, friends and community members. Living with a fistula was also associated with the experience of multiple losses, which negatively impacted a woman's identity and quality of life. In Ethiopia, a study that investigated psychological consequences of fistula among treated and untreated fistula patients showed that women felt cursed by God, were depressed with suicidal ideations, and even when treated they still had social and sexual problems. Women were often unaware of the possibility that, despite having lost their babies during the delivery that led to the fistula, they could become mothers again after a fistula repair. Despite the general trend showing that women with a fistula are rejected, in some cases, relatives are helpful and supportive; furthermore, some women remarry and deliver more children.
Few studies have systematically examined the impact and consequences of a fistula on the affected women. Qualitative studies are therefore needed to gain a deeper understanding of how a fistula impacts a woman's life experience and how women adapt to living with the condition. It is also important to understand how these women maintain their identities as wives, mothers and community members. This knowledge is necessary to inform policy and programmes for the prevention and mobilisation for treatment and rehabilitation of women affected by fistulas. In this paper, we report the findings of a study we conducted in central Uganda. The objective of the study was to explore the experiences of Ugandan women living with genital fistulas to understand how their lives were affected and how they coped with the condition.
Theoretical Framework
Conceptually, the study was informed by the stigma theory of identity management, as described by Goffman, and the coping theory, according to Lazarus and Folkman.
Goffman defines stigma as "an attribute that is significantly discrediting". Within the social process, a stigmatised person possesses an "undesirable difference" or "deviance". Stigma is a constantly changing social process that occurs when five interrelated components converge: namely "labelling", "stereotyping", "separation", "status loss and discrimination" and the playing out of "social and political power". Discrimination can be individual, structural or self-imposed. Anthropologically, the concept of stigma remains empty and decontextualized if not filled with meaning from people's lived experiences. Stigmatisation is a pragmatic response to "perceived threats, real dangers, and fear of the unknown". Stigma can either be enacted or felt: enacted stigma refers to the unfair treatment of others towards the stigmatised person, including discriminatory attitudes and acts of discrimination; whereas, felt stigma refers to the stigmatised person's internal feelings of shame (self-stigma) and fear of discrimination (perceived stigma).
Coping occurs in response to a stressful situation and is usually initiated by activities or changes aimed at maintaining one's mental health and emotional wellbeing. Lazarus and Folkman developed a measure called "Ways of Coping", which consists of predicates, each of which portrays a coping thought or action that people engage in when under stress. Two general types of coping are problem-focused coping and emotion-focused coping. Problem-focused coping is aimed at problem solving or the effort to alter the source of stress, while emotion-focused coping is aimed at reducing or managing the emotional distress associated with the situation. Most stressors elicit both types of coping, but problem-focused coping predominates when people feel that something constructive can be done; emotion-focused coping, on the other hand, predominates when people feel that the stressor is something that can be endured.
In this paper, we discuss stigma with regard to the way women perceived their lived experiences, and we attempt to elucidate the central question of interpreting what is at stake for a stigmatised woman living with a fistula in Uganda. The paper also explores the way women coped in their daily lives with this stigmatising condition.