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MALTATODAY 24 March 2024

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22 Unity SUNDAY 24 MARCH 2024 Mariella Micallef M.Phil./Ph.D. Candidate Department of Gender and Sexualities INVISIBLE illnesses include chronic medical conditions with debilitating pain and fatigue, such as myalgic encephalomyeli- tis (chronic fatigue syndrome), lupus, fibromyalgia, and Crohn's disease among many others. In recent years several studies have identified a high preva- lence of sexual dysfunction in women diagnosed with invisible illnesses. Research has especially pointed out that the widespread pain and the emotional altera- tions derived from this disease directly influence the arousal, frequency and sexual desire of these women. Although the ae- tiology of sexual dysfunctions in patients with chronic pain has been poorly addressed, re- searchers say that since it is a multifactorial problem, some of the influences are general to all dysfunctions and others specific to each disorder. Scientific literature associates these alterations as pharmaco- logical, physical and psycholog- ical. There are various medica- tions, mostly antidepressants, which can affect the sexual func- tioning of these women while physical fatigue and muscle pain, linked to intolerance to exercise, have been related as the physical causes that most influence sexu- al dysfunctions. Hypersensitivity to pain affects the sexual relationships and in- creases the feelings of tiredness. This situation, in turn, increases the possibilities of pleasant ac- tivities, and therefore, rejection of these encounters. Women with invisible illnesses showed an increase in pain during inti- macy that was associated with sexual dysfunction and with the pain threshold. Dyspareunia (difficult or pain- ful sexual intercourse) and vaginismus (painful spasmod- ic contraction of the vagina in response to physical contact or pressure, especially during sex- ual intercourse) were the com- plaints reported most frequently by women with chronic pain. Olson, Zimka & Stein's (2015) findings suggested that wom- en with fibromyalgia register a significant decrease in orgasm, self-pleasure, sexual activity and satisfaction, as well as vaginal dryness during penetration. Similarly, Sanabria & Estra- da (2019) argued that sexual dysfunctions were linked more to psychological than physical factors, since there is empirical evidence that the impact of pain in sex life depends on the cop- ing styles of each person. Thus, these realities that emerge out of the findings of this research all point towards the need for sexu- ality and sexual expression to be given priority and be addressed holistically. The presence of mood dis- orders in women with chronic pain is also generally one of the psychological factors that most often caused loss of sexual desire and decreased pleasure. Anxiety, sexual abuse, low self-esteem, lack of understanding, histo- ry of abuse and lack of support from partners have been factors that have also been related to these alterations in the sexual response. However, Shaver and colleagues (2006) identified that the widespread pain in fibromy- algia is associated with sexual dysfunction and that the coex- istence of major depression does not have any additional negative effect on sexual functioning. Al- though anxiety and depression are linked to sexual dysfunction in women with fibromyalgia, it has been found that pain is the factor that most influences this difficulty. The majority of women diag- nosed with fibromyalgia claim to have difficulties during their sex- ual relations. Indeed, Sanabria & Estrada (2019) claimed that the psychological component is the one that most affects the sexu- al response cycle. On the other hand, Olson et al (2015) stated that the loss of sexual interest of patients with invisible illnesses could be a consequence of the constant stress caused by the loss of autonomy from being sick. The lack of social support or dissatisfaction with the part- ner influence the physical and mental health of these women. The perceptions of healthcare professionals (HCPs) towards clients with invisible illnesses can influence the clients' behav- iour and interactions, affecting medical decisions, quality of care and also health outcomes. HCPs tend to describe their en- counters with clients with invisi- ble illnesses as problematic. The reason why HCPs often overlook patients' sexuality are varied, but include personal embarrass- ment, the belief that sexuality is not as important as the patient's main problem, insufficient sex- ological training or a concern about increasing patient's anx- iety when asking about sex. As a result, patients rarely receive holistic care that may include sexual health. In response to the above impli- cations, I am conducting a study with two key objectives. The first endeavours to provide a less medicalised and more humane, empathic and compassionate, outlook of women's sexuality enabling the understanding of women with invisible illnesses holistically and how the invisible illness has redefined the wom- en's sexuality. An intertwining enterprise is to gain a better understanding of these wom- en's experience of matters con- cerning intimacy and sexuality within the Maltese healthcare system. The second objective seeks to explore health service providers' perceptions regarding women with invisible illness and to an- alyse possible consequences of these perceptions in terms of how HCPs construct invisible illness and treat the woman liv- ing with it and how to improve on the care provided. The overall purpose is to put this issue at the forefront whilst giving agency to women with invisible illnesses and ultimately improve holistic care provided to them. References Olson, K., Zimka, O. & Stein, E. (2015). The nature of fatigue in chronic fatigue syndrome. Qual- itative Health Research; 25(10), 1410-1422. Sanabria, J. P., & Estrada, M. (2019). Changes in Erotic Ex- pression in women with Fibro- myalgia. Psychology of Health, 29(e2923). Shaver, J. L., Wilbur, J., Robin- son, F. P., Wang, E., & Buntin, M. S. (2006). Women's health issues with fibromyalgia syn- drome. Journal of Women's Health; 15(9), 1035-1045. Women, invisible illnesses and sexuality Women, illness, disability Perceptions of healthcare professionals towards clients with invisible illnesses can influence clients' behaviour and interactions, affecting medical decisions, quality of care and also health outcomes

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