By Gretchen L. Birbeck, MD, MPH and Kimberley A. Rockwell International Neurologic & Psychiatric Epidemiology Program (INPEP)
Social scientists have long been interested in stigma and its causes, consequences, and many manifestations. Interest in stigma-related research has expanded substantially in light of the HIV/AIDS epidemic, as care-seeking and risk-taking behaviors related to HIV/AIDS are heavily influenced by the burden of stigma. Stigma accentuates inequities and disparities because it is most aggressively directed at the socially disenfranchised and disempowered. Stigma research has characterized stigma as enacted versus felt. Enacted stigma is any form of distinction, exclusion, or restriction affecting a person by virtue of some character she/he possesses. In contrast, felt stigma is fear of enacted stigma. One might consider enacted stigma to be a form of discrimination and felt stigma a process of self-imposed limitations related to fear of this discrimination.
Prompted by a 2003 National Institutes of Health Fogarty International Center initiative aimed at encouraging studies of stigma, a collaborative team of researchers from MSU and Zambia acquired funding to study epilepsy-associated stigma in Zambia (EASZ). The EASZ study team conducted both qualitative and quantitative assessments to try to understand as completely as possible the social and economic impact of living with epilepsy in the Zambian environment. Sadly, but not surprisingly, Zambian women were found to bear the greatest burden of disease-related stigma--further confirming that power differentials accentuate the distribution and expression of stigma. Although we anticipated that women with epilepsy (WWE) would be disproportionately burdened, we weren’t prepared for the full extent of what it means to be a woman with epilepsy in Zambia. Even those of us who have delivered epilepsy care in Zambia for years were overwhelmed by this reality. For many women with epilepsy, the burden associated with the stigma far outweighs the medical burden of the disease.
Epilepsy is a neurological disorder characterized by sudden recurrent and unprovoked seizures. Seizures can be associated with abrupt loss of consciousness, tongue-biting with oral bleeding, loss of control of the bladder or bowel, and sensory or psychic malfunction. Biblical references to seizures often attribute them to spiritual possession. Similar beliefs still predominate in Zambia where much of the population believes that seizures are due to witchcraft, spiritual possession, or a curse from God. Moreover, contagion beliefs (i.e. the fear that one can “catch” seizures) prevail. Epilepsy is the most common life-threatening neurological disorder among adults in Africa and the second most common among children. It is over 10 times more prevalent in Zambia than in the U.S. Of the more than 50 million people worldwide with epilepsy, 80% of these individuals live in developing regions of the world.
Blaming the Victim
In the focus group discussions that took place at both rural and urban sites as part of the EASZ research, an enormous burden of enacted stigma aimed at women was noted. Initial discussions with traditional healers in the region revealed that when faced with a man with epilepsy, healers commonly attributed the condition to being “bewitched” because someone was jealous of the man and/or his success. In women, healers usually attributed seizures to “bad behavior” or wrongdoing. Blaming the victim is one common mechanism whereby stigma is worsened and in Zambia it begins as soon as people seek care from their local healer. Healer’s attribution usually stick with epilepsy sufferers and some even seemed to accept blame for their medical condition.
Fear of Assault and Exposure
We found that the lives of WWE are informed by fear. In traveling to participate in the focus group discussions (FGD), they worried about possible injury during a seizure, feared assault or abduction, and were concerned about broken taboos regarding exposure of others to bodily fluids. One FGD participant stated, “When I am in an attack I may be found by a stranger and I may not even be decently covered. Then everyone knows of your problem and you are shamed.” Local taboos prevent anyone except a relative in the matrilineal line from being potentially exposed to ones body fluids (urine, feces, or vomit). So women with epilepsy not only require a traveling companion to feel safe, but are limited in who could potentially assist them if they experienced a seizure. This fear of traveling was a key deterrent for health-seeking among women with epilepsy who were interviewed.
WWE also worry about the possibility of being sexually assaulted. Many women with epilepsy have been abandoned by their families and spouses. Those without a male “protector” felt themselves to be at high risk of rape, with no consequences for the perpetrator. Traditionally, if a woman is raped by a known assailant, her husband or father’s brother will seek financial retribution through the local headmen and this is seen as a strong deterrent. But without a male protector, a woman considers herself extremely open to sexual assault. Indeed, we found these fears to be all too well grounded. In a case-control study comparing women with epilepsy to women with a non-stigmatized chronic disease matched on age and source of care, we found 20.2% of WWE reported incidents of rape compared with 3.3% of the control group. The astonishingly high prevalence of rape experienced by women with epilepsy has even more sinister and far-reaching implications for individuals and communities in light of HIV rates of almost 30% among people 15-49 years of age.
Family Response and Domestic Responsibilities
The family’s response to WWE is often heart wrenching. Some family members are supportive, but many routinely rejected the individual. “If someone is bewitching you, better they should just kill you,” was what one WWE was told by an uncle shortly before he chased her from the compound. There were many reports of physical abuse, and WWE in urban settings were sometimes “sent back to the village,” ejected from their homes when their families feared the landlord would eject the entire family. “My father took care of me and protected me from my mother and brother. But since my father died…my God has abandoned me.”
In terms of domestic responsibilities, safety issues limited what WWE could or should do. In rural settings, family members rely on one another to complete the daily chores necessary for survival, such as cutting firewood, fetching water, and growing food, and women traditionally complete the bulk of these daily tasks. Labor is divided among all members of the extended family, and the social value of an individual is in part determined by her/his ability to participate in this unwritten agreement. But for WWE it can be risky to draw water, work over an open fire, travel into the bush for firewood, and care for small children alone. Some WWE continued these duties and lived in constant fear of seizure-related injury. Others were forced to relinquish these tasks, with great loss to their self-esteem and self worth. “This disease has caused me a lot of problems. I can’t walk around freely. I can’t cook because of the fire. I am not free to do things since at any time I could have an attack. I am not even free in my own home. I can’t go to draw water alone. I can’t bathe alone. All diseases hurt, but this one has really affected my heart.”
Marital Issues and Childbearing and Rearing
WWE are significantly more likely to never marry or be divorced/widowed and never remarry. If unmarried before the onset of epilepsy, WWE were faced with limited potential partners due to gossip. “Most of my problems are due to people talking a lot about me. I would like to marry again, but whenever someone shows interest, people talk to that man, and tell him about my problem and so I haven’t had any offers of marriage.” A woman’s status within a marriage is influenced by the labola or bride price that her husband had to pay for her. One WWE reported residing with an old man who frequently beat her. She had been “given” to this man by her brother who stated, “Just take her. She has no value for us.”
WWE who were married when the seizures began reported high rates of spousal abandonment. Children were often taken from them, or women were left with the children and no financial support. If the marriage had not produced children, the labola, if originally paid, was often reclaimed by the husband’s family. For those women whose spouses remained, they were terrified of being abandoned. “I had a seizure on the way to clinic. My children had to go back to the village for help and my family had to come and collect me with a scotch cart. My husband says he won’t divorce me as this problem started after we were already married, but one day he will tire of this and leave.” Said another, “If others know of my condition, they may tell my husband to leave me. I didn’t ask for this problem. People don’t realize that I didn’t ask for it. Maybe God should take my life away.”
There is a basis for this fear of abandonment and isolation. “In 2001, my husband divorced me because of my seizures and my child was only 1 year old at that time and my husband took my child when he left.” In addition to worrying about losing their children, WWE fear seizures during pregnancy, passing the condition on to their child, or injuring the child during a seizure. Some women began to doubt themselves. “We (WWE) should not have children. The seizures can get worse when we are pregnant and the work of being a mother can also worsen this problem.” WWE can be so marginalized and isolated that they doubt their ability to care for their children. “And maybe one day I will get angry and drop my baby. What kind of mother cannot care for her own child? I don’t want relations with my husband and I might hurt my own child during a fit. Maybe one day I will just find my baby dead because I threw her away.”
WWE in polygamous marriages were provided less financial support (food, material goods) and reported feeling humiliated by “not being visited” by their husbands. “My husband supports me. But since he took a second wife he never lies with me. My husband’s family and the second wife are afraid that she will get this condition from me. They think my condition shames the family. People tell my husband he should abandon me. Sometimes I drink.”
Employment Issues
Lack of financial contribution to the family unit can have significant consequences for WWE. If abandoned by family and/or spouse, many were left with few options. WWE reported higher rates of transactional sex for survival goods, at 14.3% versus 2.2% of the control group. Job status and classification are also significantly lower for WWE: 23.7% of housewives with epilepsy had no other job, compared with 16.6% of women in the control group. In rural settings, WWE faced safety concerns in the work they did, as they couldn’t work with heights, fire, or near open bodies of water. For women who worked as paid farm laborers, productivity was decreased due to intermittent seizures and drug side effects. If they experienced a seizure at work, WWE expected to be fired, and usually were. “My marriage has changed. I don’t work now and cannot bring home money like before and because of my epilepsy I can’t find work…because my condition is known, no one will hire me.” For those working in the marketplace, once their condition was “known,” people would not buy their goods, possibly due to contagion fears.
Rejection by the Greater Community
The rejection WWE experience within their family units is repeated in the larger community settings. Often taunted by children, WWE reported that no one is willing to “visit” them, that children are told not to “even take water” from them. “In town there was too much talk and even the children ridiculed me there. Even the children in town disrespected me and I cried a lot. I became so sad that I could barely force myself out of bed to do my duties.” During the shared midday meal that was part of each focus group discussion, some of the women wept at being included because at home they had not been allowed to “share the cooking pot” since their seizures began. “Because of the epilepsy people won’t sit next to me. Even my family has rejected me.”
Before conducting the EASZ study, we knew that epilepsy-associated stigma affected health-related quality of life. What the EASZ data so keenly illustrates is the extent to which all aspects of life are affected, for the individual and the entire community, and that the burden of stigma rests heaviest upon those already burdened by social and economic inequities. As bleak as these facts and the findings of the EASZ study and previous research are, the prognosis for solutions does suggest reason to be optimistic. In May 2007, the EASZ team will be submitting another proposal to NIH--this one for initiating a multi-pronged intervention program involving structural improvements in healthcare, a stigma reduction program with teachers, and the empowerment of women with epilepsy through education and community activism. Our aim is to improve the care received by people with the condition, benefiting overall quality of life for individuals and their communities.