The Impact of Leprosy on Marital Relationships and Sexual Health among Married Women in Eastern Nepal

Abstract

Background. Leprosy is one of the most stigmatized diseases known today. The stigma surrounding leprosy can be a major burden and affects many dimensions of a person's life, including intimate relationships. We aimed to investigate the experiences of women affected by leprosy regarding marital life and sexuality, comparing these to the experiences of women with other physical disabilities and to those of able-bodied women in South-East Nepal. Methods. This study used a qualitative approach and a cross-sectional, nonrandom survey design. Thirty women underwent in-depth interviews about their marital and sexual relationship by means of a semi-structured interview guide. These thirty women included ten women affected by leprosy, ten women with other physical disabilities, and ten able-bodied women living in South-East Nepal. Results. We found that many women faced violence and abuse in their marriages. However, women affected by leprosy appeared to face more problems with regard to their marital and sexual relationships than women with physical disabilities and able-bodied women. Some of these related to the fear of leprosy. Conclusions. Further research is recommended to investigate the extent of this problem and ways to ameliorate the situation of the affected women. Education and counselling at diagnosis may help prevent many of the problems reported.

Factors preventing early case detection for women affected by leprosy: a review of the literature

“…Being excluded from the home, unable to even touch their own children and fearing what their children must think of them, are reported to be some of the most difficult aspects of external stigmatisation experienced by women, particularly in India [20,21], Indonesia [19] and Brazil [14]. In research studies in Nepal, Van’t Noordende et al [22] and Try [23], describe the fear that women have of being in their community without ever having been married, or having experienced divorce, stating that being married is an important pillar of Nepali society. Van’t Noordende et al [22] suggest that women were far more likely than men to be deserted by their spouses on diagnosis, while Try [23] goes on to explain the undesirability of divorce and its ability to degrade a woman’s status in society.…”

“…In research studies in Nepal, Van’t Noordende et al [22] and Try [23], describe the fear that women have of being in their community without ever having been married, or having experienced divorce, stating that being married is an important pillar of Nepali society. Van’t Noordende et al [22] suggest that women were far more likely than men to be deserted by their spouses on diagnosis, while Try [23] goes on to explain the undesirability of divorce and its ability to degrade a woman’s status in society. In one case study she demonstrates the choice women can be left with, between enduring the physical and verbal abuse of a husband and having to ‘return as a disgrace to my parents’ house’.…”

“…In Varkevisser et al’s Nepali case study [18], even despite deformities, it was found that many spouses would remain loyal, although women more often than men. Three studies [14,18,22] highlight the sexual experience of couples once the wife contracts leprosy. All three papers’ findings agree that women experience less sexual freedom than men, particularly if they have leprosy.…”

“…Women simply had to be ready when their husbands were ready. If they blankly refused to engage in sexual intercourse, their husbands enjoyed more freedom to engage in sexual activity elsewhere [14,22]. …”

“…The inadequacy of patient and family counselling is mentioned within five of the reviewed articles [15,18,21,22,25], with all four case studies from Varkevisser et al’s study [18] reporting this inadequacy in services. Patients would receive some information about treatment and curability of leprosy, but little to nothing about the symptoms, causes or infectiousness.…”