Relationship and sexual satisfaction are important boosters of quality of life,1 a crucial concern for patients who live with chronic illness. In a life restricted by illness, sex can be a powerful source of comfort, pleasure and intimacy, and an affirmation of gender when other gender roles have been stripped away. For patients with chronic illness and their partners, a satisfying sex life is one way of feeling “normal” when so much else about their lives has changed.
Chronic illness can have profound negative effects on relationship and sexual satisfaction of both patients and partners. The effects of chronic illness on sexuality are multifactorial and can impact on all phases of sexual response (Box 1). Effects can also be classified into biopsychosocial categories.3
Box 1
1: Sexual dysfunction associated with chronic illness2
Sexual desire, capacity and activity may be altered by illness through interference with the hormonal, vascular and neural integrity of the genitalia, as well as the effects and side effects of medications. Commonly used medications that may impair sexual function are shown in Box 2.
Box 2
2: Commonly used medications that may impair sexual function4
Case history: A 50-year-old man was referred with erectile dysfunction of 12 months’ duration. History-taking revealed that he had painful arthritis, particularly affecting his left knee, and had been taking methotrexate for 12 months. Methotrexate was replaced with an anti-inflammatory agent, with great improvement in his sexual function.
Reduced cardiovascular and pulmonary function, fatigue or pain5 may limit or halt sexual activity.
Surgical procedures and medical treatments may result in altered appearance and bodily function (eg, scarring, amputation, tracheostomy, mastectomy, colostomy and hair loss). The psychological distress that often accompanies altered body image can limit patients’ sexual satisfaction.
Anxiety, loss of self-esteem, grief and depression associated with chronic illness can impair sexual fulfilment. While some couples easily accept limitation or cessation of sexual activity caused by chronic illness, for others alteration of sexual function or unsatisfactory sexual relations can precipitate a significant emotional crisis.
Case history: A 35-year-old woman suffered from severe erosive lichen planus of the vagina with repeated haemorrhages necessitating vaginectomy and urinary diversion. She was married with two children. As sex was very important to this woman, a neo-vagina was surgically fashioned, but was rendered useless by adhesions and scarring. It was some years before the patient was able to accept that she could never have penetrative sex with her husband again. She felt unfeminine and inadequate and reacted with depression, anger and emotional withdrawal. At times, she expressed suicidal ideation. With counselling and support, the couple gradually adapted to non-intercourse techniques of lovemaking.
Chronic illness alters relationship dynamics.6 The partner often assumes the role of carer as well as lover. Pre-existing relationship problems can be exacerbated by the stress of illness.
Case history: A 40-year-old woman suffered from multiple sclerosis and was confined to a wheelchair. Her husband had recently become her full-time carer and was very anxious about her. She complained of total loss of interest in sex. Questioning revealed that her husband had been fussing over her and treating her like a child. They no longer spent any time together relating as adults. When her husband allowed her more independence, and their schedule was rearranged to allow for adult-to-adult time every day, her libido slowly returned.
Society is generally uncomfortable with the notion that people who are ill or disabled might still want, or have, sex. While sexual activity may be placed on hold as other aspects of living with chronic illness intervene,7 sex remains a vital part of day-to-day living, even for men and women who are seriously disabled by illness. For example, of 383 patients who began non-invasive mechanical ventilation for chronic respiratory failure, 46% did not change their level of sexual activity, 36% were less active sexually, and 13% were more active. The average frequency of intercourse was about five times per month. The study concluded that even when a significant degree of disability is present, the desire for and experience of sexual activity persists.8
Many doctors and patients wrongly regard decline of sexual function as an inevitable consequence of ageing. Chronic illness becomes more common as men and women age. In fact, sexual dysfunction is often related more to comorbid illness than to ageing alone.9
Chronic illness can impair sexual function long before a patient reaches puberty. Young patients often face difficulties starting and maintaining relationships and experience ongoing problems with sexual function. A study of over 36 000 adolescents with chronic illness found that teenagers with non-visible disabilities are more likely to have been sexually abused, with boys having non-visible disabilities five times more likely than control boys (4.1% versus 0.8% in the control group for boys: 24% versus 17% for girls).10 Too often the sexual consequences of congenital abnormalities and chronic illness in children and adolescents are overlooked.
Case history: A 19-year-old man had been born with hypospadias. Surgery at age 4 was complicated by fistula formation. After several operations, urethral repair was eventually achieved by stitching a narrow flap of scrotal skin onto the underside of the penis and up on to the glans. At puberty, this skin became hair bearing, creating significant body image issues and tremendous shame. He dropped out of school, became a chronic smoker of marijuana and was housebound for 5 years before seeking therapy.
Therapy first involved gaining the trust of this patient, who had suffered both emotional and physical trauma. Thorough exploration of his childhood experiences, including a visit to the hospital where surgery was performed, helped him to grieve for his losses and change his focus to the present. Plastic surgery improved the appearance of his penis, which had become twisted by scarring. Hair was removed from the penile skin using electrolysis provided by a sympathetic nurse/beautician. Sex and relationship education prepared him for an adult romantic relationship. Weekly therapy lasted 4 years, by which time his social skills and self-esteem had improved to the point where he was able to get a job and live independently.
The sexual concerns of single, separated and divorced men and women with chronic illness are often disregarded. Sadly, it is assumed that, because of chronic illness or disfigurement, a discussion about sex is irrelevant because this person is “unlikely to form a relationship”. In reality, disabled people do become romantically involved. In addition, sexual activity does not require a partner. Doctors also need to be sensitive to patients’ sexual orientation. As chronic illness affects both heterosexuals and homosexuals, talking about sex with a doctor may necessitate “coming out” as a gay man or lesbian. Overcoming sexual stereotypes is crucial when dealing with sexual issues.
Despite the obvious biopsychosocial impacts of chronic illness on sex and relationships, only a minority of patients receive help for sexual concerns. For example, although the effects of diabetes on erectile function are widely known, a Danish study found that only 10% of diabetic men attending a specialist diabetic clinic had discussed sexuality with a doctor.11
Reasons for lack of doctor–patient communication about sex include:
Minimal training of doctors on relationship and sexual health issues compared with physical and mental health issues. As a result, doctors tend to dismiss sexual aspects of health as being less important than the diagnosis and treatment of illness. Additionally, many doctors lack the comfort, expertise and willingness to discuss intimate aspects of patients’ lives.
Reluctance on the part of patients to bring up their sexual concerns with doctors.12 Patients may feel embarrassed, ignorant, anxious and inadequate and fear being ridiculed for wanting sex when they are ill, old, or both. Patients are often unaware that their sexual dysfunction is related to their medical condition or treatment. Many patients still believe that sexual problems are “all in the mind” or that no remedies are available.
To broach the subject of sex comfortably with patients, doctors need to tackle three areas:
Attitudinal change. To promote enquiry and discussion about sex and relationships with chronically ill patients, entrenched negative attitudes must change, and myths and stereotypes must be rejected. The following beliefs provide a foundation for a more constructive perspective:
Sex and relationships are important aspects of health.
It is the doctor’s role to address quality of life issues including sexual health.13
People may be sexually interested and active even though they are sick, old, disfigured or disabled.
There is more to sex than just penis-in-vagina intercourse.
Acquiring knowledge. Doctors need to acquire basic knowledge about sexual function and dysfunction14 and the impact of illness and medications on sexual relations.13
Acquiring skills. Doctors need to know how to open up the topic of sex for discussion and provide help to patients and their partners using a simple plan.
The PLISSIT model of sexual counselling presents four levels of intervention, ranging from the simplest to the more complex (Box 3).15 This graded model allows doctors to manage difficulties according to their own level of comfort and expertise. While some doctors may wish to provide all four levels of intervention, those who choose to raise the subject of sex, answer simple questions and, if necessary, refer to an expert are providing adequate intervention to their patients. Initial attempts at sexual discussion may feel clumsy and embarrassing, but levels of comfort increase every time such discussions take place.
Box 3
3: PLISSIT model of sexual counselling15
As doctors are most likely to be involved at Level 1 (“permission”, or broaching the subject of sex), I will discuss this in more detail. Active screening for sexual concerns must be considered an essential part of the routine work up for any patient who suffers from a chronic illness, regardless of his or her age. This level not only gives the patient permission to talk about sex, but also seeks the patient’s consent to explore this intimate topic. Doctors need to be respectful if patients decline this opportunity, or limit information gathering, because of cultural or other taboos. Seeing the partner as well as the patient can be very helpful.
Questions about sexual issues are more comfortable for both doctor and patient when the patient understands the relevance of such questions to his or her situation. Relevance can be demonstrated, and discussion encouraged, in two simple steps:
Embed questions about sexual function in an appropriate context by making a statement that links the patient, his or her medical history (the diagnosed illness or treatment) and sexual difficulties.
Ask an open ended question. These questions begin with “how” or “what” and invite a more discursive answer than just “yes” or “no”. Some examples are shown in Box 4.
Box 4
4: Examples of questions broaching the subject of sex (the “permission” level in the PLISSIT15 model)
Once the subject of sex has been broached, a sexual history can be taken, focusing on the areas of patient concern. Keep language simple and begin with less confronting issues before moving on to more explicit and possibly embarrassing ones.18 The doctor can proceed with sexual counselling following the PLISSIT model or refer to a specialist for further treatment as needed.
Chronic illness can be frustrating for both doctor and patient. While it may be difficult to slow or limit the damaging effects of chronic illness, doctors can make a real and very positive difference to their patients by providing advice and support in the important areas of sexuality and relationships.
Abstract
Sex remains an important contributor to quality of life in many patients with chronic illness and their partners.
The effects of chronic illness on sexuality are multifactorial and can impact on all phases of sexual response.
Sexual dysfunction and dissatisfaction in chronically ill patients are underdetected and undertreated because of barriers to doctor–patient discussion about sex and lack of medical training in human sexuality.
For doctors to become more motivated to broach the topic of sex, they need to recognise that people may be sexually interested even though they are old, ill or disabled.
The PLISSIT model provides a graded counselling approach that allows doctors to deal with sexual issues at their own level of expertise and comfort.