**3. How does RA affect sexual health and intimate relationships?**

Sexual health difficulties due to RA can include decreased sexual arousal, decreased sexual desire and decreased satisfaction (Abdel-Nasser and Ali 2006; Karlsson, Berglin, and Wallberg-Jonsson 2006). The reasons for reduced sexual health often include both psychological and physical components. These factors can be experienced in combination or separately and they might change during the course of the disease. Psychological responses to chronic illness can include feelings of loss of independence, disrupted self-image, depression and anxiety (Basson and Schultz 2007). The physical components can include pain, fatigue, reduced functional ability, reduced strength and mobility (Hill, Bird, and Thorpe 2003). Both the psychological and the physical factors interrupt and affect sexual health in several ways. Problems before sexual activities can be due to decreased sexual arousal and/or negative body image (Gutweniger et al. 1999). Decreased sexual desire is reported for 50-60% of patients with RA (Abdel-Nasser and Ali 2006). Sexual health difficulties during sexual activities can be pain and/or decreased mobility. After sexual activities, persons with RA can experience sexual health problems such as decreased satisfaction and increased pain. There can also be an altering of the sexual activities such as wanting to reach orgasm quickly, because prolonged sexual activity increases both pain and fatigue (Elst et al. 1984).

Intimate relationships can be affected negatively by RA and there has been some studies concerning the situation of the partner of a person with RA according to the persons with RA (Rkain et al. 2006; Matheson, Harcourt, and Hewlett 2010; Bermas et al. 2000). Factors that can influence the intimate relationship of a person living with a chronic illness are: if the partner reacts negatively to illness; fear of rejection from the partner; lack of information about sexual rehabilitation; and if there is a cultural belief that persons with illness should not be engaged in sexual activities (Basson and Schultz 2007; Clayton and Ramamurthy 2008). There is also research showing that RA has a negative impact on the sexual relationship according to spouses of individuals with RA (van Lankveld et al. 2004; Lapsley et al. 2002). Reasons for this can be psychological distress and the need for social support within the relationship.

There is some research concerning how various medical treatments affect sexual health, but it is far from complete. Therefore there is limited information concerning the effect of common medication for RA on sexual health. Corticostereoids are often used for persons with RA and they can cause weight gain and "moon face" (i.e. edematous appearance of the face), which can be perceived as ugly and unpleasant by the person taking the medication (Clayton and Ramamurthy 2008). Feelings of being unattractive affect sexual health

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 219

Many persons with RA consider morning stiffness to be problematic and the level of morning stiffness is correlated with pain and physical capacity (Khan et al. 2009). Morning stiffness in itself can be problematic for intimate relationships if a person prefers to engage

A major consequence of RA is limited physical capacity, which is connected to a number of symptoms including pain, limited mobility, stiffness and fatigue. Another reason for limited physical capacity among persons with RA might be the attitude towards physical activities for persons with RA. Until a few decades ago persons with RA were recommended not to engage in physical activities (Reinseth et al. 2010), and this inactivity decreased their

Having to cope with a chronic disease, and its´ consequences, can cause low mood, anxiety and depression. All of these symptoms can be present for persons with RA and can affect their sexual health negatively. Depression is often associated with increased fatigue, pain and anxiety (Gettings 2010). Persons with RA can experience reduced psychological wellbeing, even if they are not suffering from depression, due to the effects of RA on their

Fatigue has been shown to affect quality of life as well as psychosocial aspects of life for persons with RA. Fatigue interferes with a person´s ability to perform daily activities of life and this symptom is present in 40-80% of persons with RA (Ibn Yacoub et al. 2011). Among persons with RA, many of them believe that reduction of fatigue should be a major treatment aim (Pollard, Choy, and Scott 2005). There is a link between disease activity and fatigue, showing that persons in remissions have reduced feelings of fatigue according to their score on fatigue scales (Ibn Yacoub et al. 2011). However, the effect of the biologics on fatigue induced by RA is small (Chauffier et al. 2011), indicating that the problem of fatigue

Many persons with RA also have secondary Sjögren´s syndrome (Coll et al. 1987), a chronic disease that can decrease a person´s sexual health both indirectly and directly. Indirect effects can be connected with increased fatigue (Ibn Yacoub et al. 2011). Direct negative effects on sexual health are due to Sjögren's syndromes effects on exocrine glands, which leads to vaginal and mouth dryness. Thus persons with Sjögren´s syndrome can feel discomfort when kissing and can also experience problems with painful intercourse (Tristano 2009). This, of course, affects sexual health negatively. In a majority of the research about RA and sexual health, the prevalence of Sjögrens syndrome in the investigated group

In order to explore women's experiences of sexual health when living with RA and their experiences of physiotherapy in this context, a research plan of four studies was prepared.

The first study was a qualitative interview study. The study consisted of interviews with ten women with RA on their views of how their sexual health was affected by RA and how their sexual health could be improved (Josefsson and Gard 2010). The subjects ("informants") varied in age (42-66 years old), illness duration (2-31 years) and HAQ levels (0-2.13). The material from the interviews was analysed with a phenomenological approach according to Giorgi (Giorgi 1985; Giorgi 2000). This model of analyses contains the following steps: 1. Reading through the material to get a general sense of the whole statement.

in sexual activities in the morning when fatigue can be less troublesome.

remains despite the development of this new class of drugs.

is not reported, which must be seen as a limitation of these studies.

Two of the completed studies are discussed in this chapter.

physical capacity even further.

daily life.

**4. Current research** 

negatively. Another common medication for persons with RA are non steroidal antiinflammatory drugs (NSAIDs). NSAIDs have a negative effect on sexual desire and sexual arousal (Clayton and Ramamurthy 2008). There is a lack of research concerning the effects of newer Disease Modifying Anti Rheumatic Drugs (DMARDs) on sexual health. However, older DMARDs, such as methotrexate and sulphasalazine, have a known negative effect on erection (van Berlo et al. 2007).

Negative impact on sexual health is common for persons with RA. Previous research has shown that sexual health is decreased for 36-70% of persons with RA (Areskoug-Josefsson and Oberg 2009). Studies have been performed in different cultural contexts, but the problems remain similar, e.g. decreased sexual satisfaction, pain during sexual activities and diminished sexual desire (Yoshino and Uchida 1981; Abdel-Nasser and Ali 2006; van Berlo et al. 2007; van Lankveld et al. 2004; Josefsson and Gard 2010). These problems affect individuals with RA in Europe, U.S.A., Asia and Africa (Yoshino and Uchida 1981; Abdel-Nasser and Ali 2006; van Berlo et al. 2007; Rkain et al. 2006; Hill, Bird, and Thorpe 2003). Persons with RA often experience a change in the importance of sexual health during the lifespan since the importance decreases with increased age (Helland, Dagfinrud, and Kvien 2008; Hill, Bird, and Thorpe 2003; Abdel-Nasser and Ali 2006; van Berlo et al. 2007).

Decreased satisfaction with sexual life has been shown to be persistent during the first two years of RA, which indicates that the problems remain even after control of disease activity has been achieved (Karlsson, Berglin, and Wallberg-Jonsson 2006). Karlsson et al also showed that persons living with RA for a longer period of time had worse sexual health. The reasons for a decrease in sexual health also include fatigue, pain, stiffness, limited physical capacity, joint mobility and depression (Kraaimaat et al. 1996; Yoshino and Uchida 1981; Helland, Dagfinrud, and Kvien 2008; le Gallez 1993). Several of the mentioned symptoms occur in combination which can further increase the difficulties. An example of this is decreased functional ability, reduced hip mobility and fatigue, which all have a negative effect on sexual health because they contribute to fatigue (Ibn Yacoub et al. 2011). The different symptoms due to RA that have a negative impact on sexual health will be described briefly.

Pain is the major reason why persons with RA seek medical care, and pain is strongly associated with functional status, anxiety, depression (Sokka 2005) and quality of life (Garip, Eser, and Bodur 2010). The experiences and the intensity of pain can differ during different stages of the disease, but for many persons with RA chronic pain is an everyday problem. Chronic pain can in itself lead to decrease of sexual health, and sexual activities can increase pain (Ruehlman, Karoly, and Taylor 2008). Thereby persons with high levels of pain might avoid sexual activities in order to lessen the risk of exacerbating their pain. The avoidance of sexual activities can be shown as less amount of sexual activities, or shortening the sexual activity time wise, as well as a complete avoidance of engagement in sexual activities.

Concerning joint mobility, whilst it is mainly hip mobility that is problematic for women with RA during sexual intercourse (Abdel-Nasser and Ali 2006), involvement of other joints can also affect a person´s sexual life. For example, inflammatory joints in the hands and limited hand function can reduce the ability to caress one´s partner. Pain in the hands can lead to avoidance of holding hands, which can limit the romantic side of an intimate relationship. The enjoyment of being caressed can also be reduced due to pain when being touched (Josefsson and Gard 2010). Hugging can also be difficult if there is inflammation or decreased joint mobility in the shoulders. Those limitations are rarely discussed when discussing sexual health, but it is important to acknowledge that a good sexual health includes more than sexual intercourse.

negatively. Another common medication for persons with RA are non steroidal antiinflammatory drugs (NSAIDs). NSAIDs have a negative effect on sexual desire and sexual arousal (Clayton and Ramamurthy 2008). There is a lack of research concerning the effects of newer Disease Modifying Anti Rheumatic Drugs (DMARDs) on sexual health. However, older DMARDs, such as methotrexate and sulphasalazine, have a known negative effect on

Negative impact on sexual health is common for persons with RA. Previous research has shown that sexual health is decreased for 36-70% of persons with RA (Areskoug-Josefsson and Oberg 2009). Studies have been performed in different cultural contexts, but the problems remain similar, e.g. decreased sexual satisfaction, pain during sexual activities and diminished sexual desire (Yoshino and Uchida 1981; Abdel-Nasser and Ali 2006; van Berlo et al. 2007; van Lankveld et al. 2004; Josefsson and Gard 2010). These problems affect individuals with RA in Europe, U.S.A., Asia and Africa (Yoshino and Uchida 1981; Abdel-Nasser and Ali 2006; van Berlo et al. 2007; Rkain et al. 2006; Hill, Bird, and Thorpe 2003). Persons with RA often experience a change in the importance of sexual health during the lifespan since the importance decreases with increased age (Helland, Dagfinrud, and Kvien

2008; Hill, Bird, and Thorpe 2003; Abdel-Nasser and Ali 2006; van Berlo et al. 2007).

Decreased satisfaction with sexual life has been shown to be persistent during the first two years of RA, which indicates that the problems remain even after control of disease activity has been achieved (Karlsson, Berglin, and Wallberg-Jonsson 2006). Karlsson et al also showed that persons living with RA for a longer period of time had worse sexual health. The reasons for a decrease in sexual health also include fatigue, pain, stiffness, limited physical capacity, joint mobility and depression (Kraaimaat et al. 1996; Yoshino and Uchida 1981; Helland, Dagfinrud, and Kvien 2008; le Gallez 1993). Several of the mentioned symptoms occur in combination which can further increase the difficulties. An example of this is decreased functional ability, reduced hip mobility and fatigue, which all have a negative effect on sexual health because they contribute to fatigue (Ibn Yacoub et al. 2011). The different symptoms due to RA that have a negative impact on sexual health will be

Pain is the major reason why persons with RA seek medical care, and pain is strongly associated with functional status, anxiety, depression (Sokka 2005) and quality of life (Garip, Eser, and Bodur 2010). The experiences and the intensity of pain can differ during different stages of the disease, but for many persons with RA chronic pain is an everyday problem. Chronic pain can in itself lead to decrease of sexual health, and sexual activities can increase pain (Ruehlman, Karoly, and Taylor 2008). Thereby persons with high levels of pain might avoid sexual activities in order to lessen the risk of exacerbating their pain. The avoidance of sexual activities can be shown as less amount of sexual activities, or shortening the sexual activity time wise, as well as a complete avoidance of engagement in sexual activities. Concerning joint mobility, whilst it is mainly hip mobility that is problematic for women with RA during sexual intercourse (Abdel-Nasser and Ali 2006), involvement of other joints can also affect a person´s sexual life. For example, inflammatory joints in the hands and limited hand function can reduce the ability to caress one´s partner. Pain in the hands can lead to avoidance of holding hands, which can limit the romantic side of an intimate relationship. The enjoyment of being caressed can also be reduced due to pain when being touched (Josefsson and Gard 2010). Hugging can also be difficult if there is inflammation or decreased joint mobility in the shoulders. Those limitations are rarely discussed when discussing sexual health, but it is important to acknowledge that a good sexual health

erection (van Berlo et al. 2007).

described briefly.

includes more than sexual intercourse.

Many persons with RA consider morning stiffness to be problematic and the level of morning stiffness is correlated with pain and physical capacity (Khan et al. 2009). Morning stiffness in itself can be problematic for intimate relationships if a person prefers to engage in sexual activities in the morning when fatigue can be less troublesome.

A major consequence of RA is limited physical capacity, which is connected to a number of symptoms including pain, limited mobility, stiffness and fatigue. Another reason for limited physical capacity among persons with RA might be the attitude towards physical activities for persons with RA. Until a few decades ago persons with RA were recommended not to engage in physical activities (Reinseth et al. 2010), and this inactivity decreased their physical capacity even further.

Having to cope with a chronic disease, and its´ consequences, can cause low mood, anxiety and depression. All of these symptoms can be present for persons with RA and can affect their sexual health negatively. Depression is often associated with increased fatigue, pain and anxiety (Gettings 2010). Persons with RA can experience reduced psychological wellbeing, even if they are not suffering from depression, due to the effects of RA on their daily life.

Fatigue has been shown to affect quality of life as well as psychosocial aspects of life for persons with RA. Fatigue interferes with a person´s ability to perform daily activities of life and this symptom is present in 40-80% of persons with RA (Ibn Yacoub et al. 2011). Among persons with RA, many of them believe that reduction of fatigue should be a major treatment aim (Pollard, Choy, and Scott 2005). There is a link between disease activity and fatigue, showing that persons in remissions have reduced feelings of fatigue according to their score on fatigue scales (Ibn Yacoub et al. 2011). However, the effect of the biologics on fatigue induced by RA is small (Chauffier et al. 2011), indicating that the problem of fatigue remains despite the development of this new class of drugs.

Many persons with RA also have secondary Sjögren´s syndrome (Coll et al. 1987), a chronic disease that can decrease a person´s sexual health both indirectly and directly. Indirect effects can be connected with increased fatigue (Ibn Yacoub et al. 2011). Direct negative effects on sexual health are due to Sjögren's syndromes effects on exocrine glands, which leads to vaginal and mouth dryness. Thus persons with Sjögren´s syndrome can feel discomfort when kissing and can also experience problems with painful intercourse (Tristano 2009). This, of course, affects sexual health negatively. In a majority of the research about RA and sexual health, the prevalence of Sjögrens syndrome in the investigated group is not reported, which must be seen as a limitation of these studies.
