Epigraph Vol. 17 Issue 3, Fall 2015
A Remarkable Round-Table of Experts: Arranged Marriages in People with Epilepsy
"To disclose (epilepsy) or not (during marital negotiations)?" This was the topic of an intense debate at the University College, London, Grand Challenges Initiative-supported round-table meeting of about 25 experts held on April 19, 2015 at Ludhiana, Punjab, India.
Neurologists, physicians and other professionals caring for people with epilepsy (PWE) across many South Asian countries and to some extent other resource-limited countries are faced with this dilemma time and again. Yet, the physicians have no well-founded answers when young, unmarried PWE and their families approach them with the question. The question almost always is whether or not to inform their prospective suitors that they are affected by epilepsy.
"To reveal or to conceal" is a dilemma faced by almost all PWE in a variety of circumstances all over. However, the problem is further compounded when PWE go through arranged marriages.
Arranged marriages are particularly common (accounting for nearly 80% of all marriages) in India and much of South Asia (including Pakistan, Bangladesh, Nepal and Sri Lanka). In these countries, parents or elders in the family choose marriage partners for younger unmarried people and hence negotiate marriages on the basis of religion, caste, physical features, economic status, and educational achievements. In these arranged marriages, the potential marriage partners get very little opportunity to meet before marriage and hence to discuss both appealing and undesirable attributes (e.g., epilepsy). Furthermore, hiding epilepsy during marital negotiations is underpinned by the intensely felt stigma associated with epilepsy.
Societal beliefs about epilepsy
Epilepsy was equated with insanity and hence a legitimate ground for divorce under the Hindu Marriage Act in India. The act was amended by the Indian Parliament largely due to the efforts of neurologists across the country in 1999 and epilepsy is no longer a ground for divorce. Nevertheless, societal beliefs regarding epilepsy remain intensely negative and PWE experience high levels of both felt and enacted stigma during marital negotiations.The round-table brought experienced epilepsy specialists, social scientists, social activists and legal and administrative experts together to deliberate on ways and means of dealing with the situation. The expert opinion generated was based on scanty published literature, individual opinion of the experts and discussions on several transcripts of physician-patient discussions specifically on this subject. The experts agreed that both "felt" and "enacted" stigma associated with epilepsy during marital negotiations was heavily gendered and affected women much more than men. Beyond this, the experts felt that there were huge knowledge gaps. To what extent epilepsy impacts marriage prospects in the context of arranged marriages has not been adequately documented. However, although the precise burden of the problem has not yet been fathomed, the felt stigma associated with epilepsy is the primary reason for hiding epilepsy during negotiations in arranged marriages.
Hiding epilepsy in arranged marriages however, comes with a heavy cost. Women with epilepsy move to patrilocal conjugal dwellings after marriage and under the circumstances are deprived of the much required social and family support they were able to garner in their natal homes. Because the fact that they have epilepsy is under wraps, these women have no choice but to take their epilepsy medications in a clandestine manner (often by putting the epilepsy medicines in vitamin bottles). This inevitably leads to compromised adherence to epilepsy medications. Also, for the same reason, PWE are unable to make the required visits to physicians at a time when frequent consultations with physicians are much required to deal with contraception, pregnancy planning and childbirth.
Who counsels PWE in seeking matrimonial alliance through arranged marriages? Our guest experts from England posed this question and wondered whether neurologists had the time and expertise to counsel PWE on their matrimonial designs. In most of South Asia and other resource-poor countries, in which arranged marriages are common, marriage counsellors are few and far apart and do not have specific experience in tackling epilepsy-related matrimonial issues. As a result the responsibility falls squarely on the physicians who have been following the PWE in their clinics.
There is no "one size fits all" formula to counsel PWE regarding matrimony. Neurologists should bring up the topic for discussion early on. Often parents of an adolescent girl visit the neurologist full of trepidation: "How will we get her married?"; "Who will marry a person with epilepsy?" At this stage, it is crucial to counsel them in an accurate yet optimistic manner about the mostly benign nature of epilepsy with the possibility of remission, and the practicalities of marriage, sexual relationships, pregnancy, childbirth and child-rearing. Perhaps more important is to emphasize the importance of empowering the girl child with education and the later prospect of employment so that epilepsy however disparaging is relegated to the background by favorable attributes such as job-worthiness and a good income at the time of marital negotiations.
The father of 24 year old Sushma (name changed) met the neurologist with a hope for a solution. He was desperate to get his daughter married as is societal practice in much of South Asia (Here, it is the parents and extended families who are responsible for deciding a suitable match for young women and men of marriageable age). On several occasions, when he and his wife disclosed the fact that Sushma sometimes would have epileptic seizures for which she needed to take epilepsy medications, the marital negotiations between his and the prospective bridegroom's families were called off forthwith. He had several questions including whether and how could Sushma's epilepsy medications be stopped before getting her married but he was conclusive about one issue: He would not disclose the fact that Sushma had epilepsy in any of the future matrimonial negotiations.
"Whether to disclose (epilepsy during marital negotiations) or not to and when to disclose" is ultimately a decision of the individual and his/her family. However, the neurologist might play a useful role by emphasizing the importance of disclosure at the appropriate time. It is probably fitting to apprise PWE and their families seeking matrimonial alliances through arranged marriages about the problems of hiding epilepsy in as intimate a relationship as marriage.
The best way out is a turnaround in people's attitudes and beliefs — however, this might take a long time. A concerted effort is desirable at multiple levels to take away the stigma associated with epilepsy. Undoubtedly, neurologists should take the lead but also take the help of other sectors — governmental, legal, policy-makers, social activists and so forth.
The round-table meeting set the pace for a multidisciplinary approach but with emphasis on what should be done by neurologists and professionals caring for PWE. One conclusion echoed: There is much to be done and this is just the beginning.
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