Sexuality in the Context of Chronic Illness Chapter 20 CSL 6794

Chronic Illness often requires those afflicted and their partners to cope with restrictions and/or changes in their sexuality and so alters the meaning and significance of their sexual experiences. Research in the area of sexuality in the context of chronic illness has probably been hindered by a societal taboo that supports the idea that patients with a chronic disease are not “Sexual beings.”

Sexual dysfunctions as defined in the DSM do not adequately encompass the range of sexual issues and concerns of individuals with chronic illnesses. The situation in which someone is sexually unhappy but has no apparent sexual dysfunction is referred to as “sexual dissatisfaction.”

Classification of sexual problems affecting individuals with chronic illness Disruption in the experience of sexual pleasure: Due to physical factors Due to emotional factors Disruption of the sexual relationship The relationship suffers because of the illness

Sexual adjustment problems The sexual relationship suffers from the consequences of the disease Practical sexual problems Incontinence, fatigue, etc. Disruption in sexual development A disease may interrupt or interfere with a crucial stage of sexual maturation.

Psychological Well-Being Acceptance The extent to which patients experience psychological distress is dependent on the extent to which they succeed (or fail) in accepting the disease as a part of their lives. Acceptance of the chronic disease is a process in which patients come to accept not only the diagnosis but also the course and treatment regimen of the disease, including expected complications and limitations.

Body Image: A chronic illness will often give rise to questions about one’s own attractiveness. Distinctions: Changes in appearance Changes in functioning Changes in incontinence

Self-Esteem In addition to the impact on attractiveness, the limitations imposed by the disease (e.g., immobility, fatigue, pain) may require a patient to surrender some of his or her responsibilities and tasks to the partner, which may seriously affect the patient’s self-esteem.

Mood Disorder: A chronic disease often compels people to make changes in their identity, inducing a shift in priorities and necessitating finding new meanings in their lives. Patients with chronic diseases of development disorders, including depression and anxiety disorders. It has been estimated that depression and anxiety disorders are 1.5 to 4 times more common in people with chronic disease.

Relationship Factors The individual who opts for an ill partner accepts the “person-with-the-disease.” When the diagnosis of a chronic illness is made in someone in an existing relationship, the couple is confronted with something unexpected, something for which no one could prepare him/herself.

Illness requires both partners to confront some grief and mourning work –to say goodbye to the old body and/or the healthy partner. But also high adaptability to the new situation with changed responsibilities and roles (sexual and otherwise).

Caring for a partner with an illness involves a loss of personal freedom and time, which may lead to the experience of a “limited life.” Partners who are well frequently report that they do not dare discuss their own concerns with their partners lest they hurt them.

Sometimes patients and/or partners use the chronic illness as an ability or justification to end an existing unsatisfying sexual relationship Sometimes chronic disease is the starting point of an extramarital affair.

Breaking the Conspiracy of Silence Patients remain silent out of shame or fear of rejection. Professionals remain silent for several reasons: fear of not being able to answer eventual questions about sexuality or a belief that it is not necessary to talk about sexuality if the patient does not ask or when the patient has no part

Ramakers and Jacobs (2008) describe four states typical of many couples: Stage 1 – The first is a phase of absence, in which patient and partner are not thinking about sexuality. Stage 2 – Phase of uncertainty about sexuality Stage 3 – Phase of sexual opportunities during which partners try to reshape their sexual relationship Stage 4 – a phase of sexual stability in which a new – active or inactive – homeostasis is achieved.

Relevant questions might include… Are the sexual dysfunctions and/or impaired sexual experiences The direct result of physical aspects of the disease (e.g., ED secondary to Peyronie’s Disease) The indirect result of physical complications of the disease (e.g., paralysis, pain, etc.) The indirect result of illness-related pyshcological mechanisms (e.g., depression, anxiety, low self-esteem) Iatrogenic in origin (e.g., due to surgery, medication, etc.)

Are there any other relevant factors resulting from the disease such as physical appearance, cognitive disturbances, impaired fertility, that may affect sexual functioning and/or sexual experiences? Were there already disturbances in sexual functioning and sexual experiences before the onset of the chronic illness? Premorbid sexual functioning is the best indicator of the possibility or quality of sexuality after the diagnosis or treatment of an illness or disability.

Because not every sexual dysfunction is perceived as problematic by patients and their partners, it is important to ask for whom the dysfunction really is a problem. Pg. 445

In order to help couples determine what is still possible sexually, it may be necessary in the course of treatment to: Provide psychoeducation about how this illness or disability may affect sexual functioning and sexual experiences. Address negative attitudes Explore how the physical limitations due to the illness can be overcome Be attentive and seek solutions for relational tensions.