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The Experience of Chronic Illness in Intersection with Gender and Social Context (Study of Women's Experience of Multiple Sclerosis)

Document Type : Scientific Research

Author

Women studies, Allameh Tabataba'i, Tehran, Iran.

Abstract

Objective:  Multiple Sclerosis (MS) is one of the chronic illness that, due to its multiple and stable physical and mental dimensions, has major and continuous consequences on a wide range of aspects of the individual and social life of the patient. This illness has a female face based on its widespread prevalence among women and also the specific effects it has on women. Nevertheless, in domestic studies, the experience of women with this illness has been less considered, and the few studies that have been conducted are often based on a clinical-medical and quantitative approach. Accordingly, in this article, an attempt is made to study the experience of women with Multiple sclerosis in the social context of Iranian society. Method: According to the main goal of this study, a feminist phenomenological approach has been adopted. Semi-structured interview was conducted with 25 women suffering from this illness who were selected using the purposeful sampling method and Criterion sampling strategy and the interviews were analyzed based on the procedure suggested by Moustakas. Results:  Based on the narratives expressed in the interviews, the studied women's experience of Multiple sclerosis illness was formulated in the themes of living in suspension, shame of powerlessness, sexual inactivity, maternity risk and spousal apprehension. "Life in suspense" means that the women participating in this study, in describing and expressing their experience of MS illness, have mentioned the sense of uncertainty and not having a clear and reliable image of the future. "Shame of powerlessness" refers to the fact that the fatigue and disability caused by MS goes beyond the physical dimension, and women with MS feel a kind of shame due to their inability to perform daily activities. "Sexual inactivity" indicates that uncertainty and disability in MS affect the patient's most private activities, especially sexual performance, in such a way that it leads to a change in the research participants' self-perception and endangering personal relationships with their wives. The forth theme is “Risky motherhood”. In such a situation, "motherhood" in women with MS becomes a "risky" issue for both the patient and the child at various fetal stages and thereafter in terms of meeting the child's care needs. Finally, the theme of "marriage anxiety" that refers to research participant concerns about the continuity of married life, worry about the husband's lack of understanding of the patient's situation and etc. Such conditions make marriage and playing the role of a wife a problematic situation for women with MS. Conclusion:  According to the extracted themes, the experience of female participants in this research was conceptualized under the main theme of "identity anxiety" that refers to the experience of anxiety and worry about unfulfilled gender identity. This experience and understanding of MS, is a result of the intersection of the experience of chronic illness with gender, the body, and the social context in which a woman's identity is closely tied to pre-defined expectations and roles such as sexual attractiveness, marriage, homemaking, wifehood, motherhood, etc.

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References
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Health Psychology
Volume 13, Issue 49
August 2024
Pages 55-70
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