CHAPTER 6 Sexuality in chronic illness and disability
When you have completed this chapter you will be able to:
INTRODUCTION
Sexual expression is a part of life, and of course sex is important because it means that the human species can propagate! Satisfaction with sexual relationships is important to quality of life (Assalian et al, 2000). Even though sex and sexual expression is a fundamental part of life, it may be a taboo topic for conversation by many people. This may be even more so for adults with chronic conditions and/or disability, because sex is often associated with beauty and physical fitness; therefore people with a visible disability or illness may be perceived by others to be non-sexual (Kralik et al, 2001). People with disability or illness, however, are sexual beings and often have to overcome uninformed judgements and attitudes in addition to personal and physiological barriers to sex and sexuality (Kralik et al, 2003). For example, disability and illness may result in many physical and psychological changes to movement, bodily sensations, abilities to communicate, continence, behaviour, relationships and sexual functioning. These changes may affect sexuality, body image and the feelings that people have about themselves (Kralik & Telford, 2006). In addition, symptoms such as pain and fatigue, and prescribed treatments and medicines, may also affect sexual desire and sexual function (Ambler et al, 2001). For people with chronic illness and/or disability, sex can be a source of comfort, intimacy and pleasure when illness has changed so many aspects of life (McInnes, 2003). People with chronic illness and disability can experience problems with arousal, lubrication, fear, position, exacerbating pain, low confidence, performance worries and relationship problems (Ambler et al, 2001) and also difficulties when initiating new relationships. Although the physical demands of sexual activity can be high, few chronic illnesses require restriction of sexual activity (Nusbaum et al, 2003) but rather may require rethinking, trialling and adapting to changed approaches (Schover, 2000; Kralik & Telford, 2006). The range of problems and people’s preferences for help suggest that multidisciplinary intervention is required (Ambler et al, 2001).
Effective nursing care has as its foundation the health worker understanding the whole body, yet the topic of sexual health for people with illness and/or disability may be a neglected element within the scope of holistic nursing care (Kralik et al, 2001; Haboubi & Lincoln, 2003). Certainly training in sexual health is limited (Nubaum et al, 2003). Sexuality and sexual functioning is a nursing concern because it is an important aspect of a person’s sense of wellbeing and quality of life. While health workers may not be able to affect the progression or physiological impact of chronic illness, they may be able to make a difference to people by affirming and validating the issues people experience and providing supportive advice and navigation towards resources (Evans, 2000). Health workers may need to work with people to access information or participate in conversation about sexuality with people who are learning to live with an altered body as a consequence of illness or disability. It is important, however, that health workers who may need to counsel people on this topic are comfortable with talking about sex and sexuality (Dunning, 2005; Guthrie, 1999).
BACKGROUND
The decision to use email came from our knowledge about some of the consequences of illness that people living with chronic conditions confront in their lives. Challenges such as fatigue, pain, decreased socialisation and decreased mobility may limit attendance at groups or participation in one-to-one interviews. The use of email enabled the collaborative process of data generation and data analysis to occur concurrently and frequently, and enabled longitudinal research with people living with chronic illness to describe the processes involved with ‘moving on’ or transition. This inquiry has reinforced electronic discussions as one research method for gaining understandings longitudinally (Kralik et al, 2005, 2006a).
Transition encompasses people’s responses during a passage of change. Life and living involve transitional processes (Kralik et al, 2006b). A transitions approach to disruptive life events such as chronic illness creates a focus on what is changing, how we experience those changes and how we can respond. It is not a focus on the illness or disease. Times of transition can be very difficult periods in people’s lives. People experience transition when one chapter of their life is over and another begins. They look for ways to move through the turmoil to create some order in their lives by reorienting themselves to new situations (Papalia & Olds, 1996). Transition may also provide people with the opportunity to review their life, get rid of some old baggage and find new ways of living. Transition can involve testing new ways through trial and error living, doing and being (Kralik et al, 2006b).
During frequent email conversations, participants communicated about events and experiences in their everyday lives. The impact of illness on sexuality was a topic of conversation as participants explored ways to live with an altered sense of sexuality. Stories told often persuaded people to revisit their own stories as new understandings emerged through listening and reflecting on the lives of others in the group. It was evident that chronic illness and/or disability can have profound impact on the individual and partner and the effects can be multifactorial (McInnes, 2003).
DEFINING THE TERMS
There have been many definitions of the terms ‘sex’, ‘sexuality’ and ‘sexual health’. Some writers suggest there have been no adequate definitions that can be broadly utilised in healthcare (Batcup & Thomas, 1994; Harrison, 1999). Sex has been defined as ‘sexual activity such as sexual intercourse’ (Roe & May, 1999) and sexuality as ‘an individual’s self-concept which is shaped by their personality and societal upbringing’ (Evans, 2000). This is expressed as sexual feelings, attitudes, beliefs and behaviours (Evans, 2000) with definitions extending to the desires people have, their feelings and sexual expressions. Sexuality spans the biological, psychological, social, emotional and spiritual dimensions of people’s lives (Roe & May, 1999). Sexual health is the physical, emotional, psychological, social and cultural wellbeing of a person and the capacity and freedom to express sexuality without judgement, exploitation, oppression, physical or emotional harm (Haboubi & Lincoln, 2003). The meanings of the terms ‘sex’ and ‘sexuality’ are closely linked and by citing these definitions we do not suggest that it is the same for all people. On the contrary, sex and sexuality experiences, meanings and understandings change throughout the life span and as a result of different experiences.
Sexual activity continues across the life span yet older people may be perceived as being incapable of a sexual relationship and therefore not requiring support, advice or education in this area (Wallace, 2005; Roe & May, 1999). Sexual health needs are often a delicate balance of emotional and physical issues, and those seeking advice may be worried and concerned about misconceptions. Atkinson (1997) confirms that upbringing, belief imprinted in the formative years and societal values are deterrents to older people requesting advice, as it is not necessarily the ‘done thing’, and that this negative stereotype is supported in the media, where ageing and sexuality are not positively portrayed.
Sexual development and sexual identity evolve throughout the life span. However, many factors shape the sexual attitudes and needs of individuals, which may alter at times throughout the life span in response to given circumstances (Papalia & Olds, 1996;Fleming, 1998). For example, people who have a past history of sexual abuse or assault may interpret sexuality differently (Van Loon & Kralik, 2006). When chronic illness becomes a part of people’s lives, surgical intervention and medical treatments may result in their appearance being altered and symptoms such as pain, stiffness, fatigue and depression may change the way they feel about their sexual selves. We asked people living with chronic illness and disability what sexuality meant to them.
THE IMPACT OF CHRONIC ILLNESS AND/OR DISABILITY ON SEXUALITY AND SEXUAL HEALTH
The effects of chronic illness and/or disability on sexuality and sexual health can be classified as biological, psychological and social (Parish, 2002; McInnes, 2003; Yee & Sundquist, 2003). Biological or physical factors that affect sexuality and sexual health are those that are associated with the illness, disability or treatments. Examples may be reduced cardiovascular or pulmonary function, fatigue and pain. Surgical procedures and treatments may result in altered function and/or appearance. Psychological factors relate to changed relationships, depression, anxiety and grief associated with loss and change associated with chronic illness and/or disability. Social factors relate to challenges such as stigma and how others perceive people with illness and disability (Earle, 2001). While these factors will be discussed separately, they are entwined in the realities of everyday life for people with chronic illness. We will now discuss these factors in more detail.
BIOLOGICAL IMPACT
Sexual dysfunction is caused by different conditions, with even more differences between men and women. The desire and capacity to engage in sexual activity can be affected by illness and disability in multiple ways through neurologic, vascular and endocrine systems (Berman & Bassuk, 2002; Nusbaum et al, 2003) and as a consequence symptoms such as pain and fatigue may be prioritised in people’s lives (Kralik et al, 2003). In addition, the effects of medications and treatments (McInnes, 2003) and surgical intervention can also affect an individual’s capacity and desire to engage in sexual activity (Guthrie, 1999).
There is a lot of importance placed on a sexually functioning body and the popular ideal is for people to be thin, fit and healthy. The reality, however, is that people have an assortment of body shapes, and illness and/or disability can further reshape the human body, which can affect a person’s sexuality significantly, as Bronwyn explains:
As with other life activities, the person who is learning to live with chronic illness and/or disability may have to make adaptations in their life. For example, sexual activity may be less spontaneous and require planning in order to prepare for issues such as fatigue, pain, breathlessness and bowel and bladder evacuation, as the nerves servicing the reproductive organs can be impaired, leading to changes in sexual functioning. Slowed arousal time, reduced libido or desire and altered orgasmic response are not uncommon experiences. Fatigue also dampens sexual desire (Barrett, 1999). Men with illness or disability may experience erectile dysfunction (a common problem that can have serious physical and psychological effects—also known as impotence) or difficulty due to physiological factors or medication that may respond to further investigations. Some people with illness and disability may need to learn to incorporate prosthesis or another permanent intervention such as an indwelling urinary catheter into their lives and sexual activity. Adaptations to be made may include trying different positions during sex activity, expanding their sexual repertoire, or a partner playing a more active role. Masturbation may enable experimentation with changing bodily sensations. It can be important for people with an illness or disability that impairs the neurologic system to identify areas of the body that allow sensation and to use those areas to augment sexual expression (Nusbaum et al, 2003). Other forms of sexual expression may also be used. This may call for experimentation and alternative methods of pleasuring. Assistive devices may be useful for some people—these can be purchased discreetly by mail order (Earle, 2001).
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