Women, invisible illnesses and sexuality | Mariella Micallef

Invisible illnesses include chronic medical conditions with debilitating pain and fatigue, such as myalgic encephalomyelitis (chronic fatigue syndrome), lupus, fibromyalgia, and Crohn’s disease among many others. In recent years several studies have identified a high prevalence of sexual dysfunction in women diagnosed with invisible illnesses. Research has especially pointed out that the widespread pain and the emotional alterations derived from this disease directly influence the arousal, frequency and sexual desire of these women. Although the aetiology of sexual dysfunctions in patients with chronic pain has been poorly addressed, researchers 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 pharmacological, physical and psychological. There are various medications, mostly antidepressants, which can affect the sexual functioning of these women while physical fatigue and muscle pain, linked to intolerance to exercise, have been related as the physical causes that most influence sexual dysfunctions.

Hypersensitivity to pain affects the sexual relationships and increases the feelings of tiredness. This situation, in turn, increases the possibilities of pleasant activities, and therefore, rejection of these encounters. Women with invisible illnesses showed an increase in pain during intimacy that was associated with sexual dysfunction and with the pain threshold.

Dyspareunia (difficult or painful sexual intercourse) and vaginismus (painful spasmodic contraction of the vagina in response to physical contact or pressure, especially during sexual intercourse) were the complaints reported most frequently by women with chronic pain. Olson, Zimka & Stein’s (2015) findings suggested that women with fibromyalgia register a significant decrease in orgasm, self-pleasure, sexual activity and satisfaction, as well as vaginal dryness during penetration.

Similarly, Sanabria & Estrada (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 coping styles of each person. Thus, these realities that emerge out of the findings of this research all point towards the need for sexuality and sexual expression to be given priority and be addressed holistically.

The presence of mood disorders 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, history 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 fibromyalgia is associated with sexual dysfunction and that the coexistence of major depression does not have any additional negative effect on sexual functioning. Although 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 diagnosed with fibromyalgia claim to have difficulties during their sexual relations. Indeed, Sanabria & Estrada (2019) claimed that the psychological component is the one that most affects the sexual 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 partner influence the physical and mental health of these women.

The perceptions of healthcare professionals (HCPs) towards clients with invisible illnesses can influence the clients’ behaviour and interactions, affecting medical decisions, quality of care and also health outcomes. HCPs tend to describe their encounters with clients with invisible illnesses as problematic. The reason why HCPs often overlook patients’ sexuality are varied, but include personal embarrassment, the belief that sexuality is not as important as the patient’s main problem, insufficient sexological training or a concern about increasing patient’s anxiety when asking about sex. As a result, patients rarely receive holistic care that may include sexual health.

In response to the above implications, 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 women’s sexuality. An intertwining  enterprise is to gain a better understanding of these women’s experience of matters concerning 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 analyse possible consequences of these perceptions in terms of how HCPs construct invisible illness and treat the woman living 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.

Unity Gazzetta is a collaboration between MaltaToday and the Faculty for Social Wellbeing