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**Prompt**
Discuss the integration of sex therapy into psychosocial intervention for infertility. Include information on the importance of careful assessment and diagnosis, cultural and religious diversity, and recognition of common experiences of shame, guilt, and inadequacy regarding infertility and sexuality. Also, summarize the basic behavioral strategies within psychosocial counseling that are most commonly employed with infertility patients in the treatment of their sexual difficulties. Finally, provide a case discussion that highlights the complexities of assessing and working with sexual complaints of couples who are undergoing fertility treatments.

Response:
Given that many patients are reluctant to access psychosocial support during fertility treatments—perhaps due to the emotional and physical burdens of the treatment process—more targeted psychosexual approaches may be warranted to mitigate or remediate the sexual toll taken on infertile individuals and couples (Boivin, Scanlan, & Walker, 1999; Vizheh et al., 2013). However, the literature suggests that interventions need to move beyond compliance and adequate sexual functioning to the broader realm of maintaining and even enhancing sexual pleasure and intimacy throughout, and subsequent to, the often protracted course of medical treatment (Millheiser et al., 2010; Schanz et al., 2011). That said, when working on relationship and sexual issues is a priority for the couple, a more holistic and integrative therapeutic approach focused on enhancing intimacy and communication, on reducing the focus on timed intercourse (i.e., "work sex"), and on disrupting the link between intercourse and reproductive failure is necessary to improve sexual satisfaction and pleasure (Daniluk & Frances-Fischer, 2009; Leiblum, 1997).

**INTEGRATION OF SEX THERAPY INTO PSYCHOSOCIAL**

**INTERVENTION FOR INFERTILITY**

Effective treatment requires careful assessment and diagnosis of the particular sexual problem and the extent to which the problem is causing the couple distress or impeding the success of their fertility treatments (see Figure 19.1). There is considerable evidence for the effective treatment of the sexual difficulties that most commonly impede pregnancy and successful fertility treatments (e.g., erectile dysfunction, ejaculation difficulties, vaginismus, dyspareunia) that can be applied to working with infertile couples whose sexual problems are impeding spontaneous pregnancy or successful medical intervention. As treatment effectiveness will be directly related to the couple's motivation and readiness to address their sexual concern(s), it is essential to determine the extent to which sex therapy is a priority for both members of the couple before proceeding with treatment (Hammer Burns, 2006; Leiblum, 1997).

An awareness of, and sensitivity to, cultural and religious diversity related to the meaning of infertility and what is considered appropriate sexual expression is critical when working with people from different cultures and religions (Hammer Burns, 2006).

As well, recognition of the common experience of shame, guilt, and inadequacy regarding infertility and sexuality is paramount in providing sensitive support and intervention (Daniluk, 1998; Leiblum, 1997). It is important to challenge rigidly held beliefs, such as that a woman's worth is tied to her fertility and that a man's worth is tied to his ability to sexually perform or to the quality of his sperm. However, therapists must be sensitive to the extent to which these views are embedded in the clients' cultural and religious beliefs. For example, after six failed IVF attempts, a highly educated and very successful Muslim woman with whom Daniluk was working, said in anguish, "If I am 386

not a mother I am nothing . . . my husband will take another wife and in my culture he has every right to do so."

In her review of the literature and discussion of sexual counseling and infertility, Hammer Burns (2006) summarizes the basic behavioral strategies within psychosocial counseling that are most commonly employed with infertile patients in the treatment of their sexual difficulties. These include (1) anxiety reduction techniques (e.g., progressive relaxation, assertiveness training); (2) directed masturbation (for men or women who are unable to achieve orgasm); (3) orgasmic reconditioning (i.e., directed fantasy in relation to masturbation to shift arousal stimuli); (4) imagery techniques (i.e., assessment and rehearsal of sexual response); (5) explicit homework assignments (e.g., massage, communication exercises); and (6) sensate focus exercises (Hammer Burns, 2006, pp. 228–229).

In general, approaches to treatment involve an individualized combination of interventions that address the unique sexual problems and contributing factors of each couple (Hammer Burns, 2006; Leiblum, 1997). They may include medication, the use of devices (e.g., vibrators), and medical or surgical intervention. Hypnosis (e.g., Araoz, 2005) has also been integrated into treatment with some success. Psychosocial interventions are more commonly used in treating fertility-related distress (and, by extension, the sexual difficulties and dissatisfaction that frequently accompany the inability to produce a child) and medical fertility investigations and treatment (e.g., Wischmann, 2010). We turn now to a case example to highlight the complexities of assessing and working with sexual complaints of couples who are undergoing fertility treatments.

**CASE DISCUSSION**

Lynn, 39, and Bill, 56, a European-American couple, were referred for therapy by the medical team of a local fertility clinic. Both were well-educated professionals. The couple had been diagnosed with primary infertility based on Lynn's fertility status and had been pursuing a pregnancy for 36 months. This was a second marriage for Bill, who had two children from his previous marriage, both now in their early 20s. Lynn had always been ambivalent about having children while pursuing her MBA and building her investment consulting business. However, when she reached her mid-30s and things started to stabilize in her business, Lynn found her thoughts turning to having children.

She and Bill had originally agreed that they would not have children, and Bill was looking forward to retirement in the next 10–12 years. They went through 10 sessions of couple counseling to work through their deadlock on this issue and agreed that they would attempt to have only one child.

After several months of trying to conceive without success, Lynn and Bill's general practitioner referred them to a fertility specialist, and they underwent a standard medical investigation. Lynn was found to have a slightly elevated day 3 FSH (follicle-stimulating hormone)—indicating diminishing ovarian reserve—and, to the surprise of 387

the couple, Bill's sperm parameters were found to be highly problematic (low count, poor motility, compromised morphology). They were informed that their only viable treatment option was IVF with ICSI. Given Bill's poor sperm parameters, the couple were encouraged by the clinic to select an anonymous sperm donor to use as backup for their treatment cycle in the event that Bill's sperm sample was inadequate for fertilization on the day of egg retrieval. Bill was unable to produce a fresh sperm sample the morning of Lynn's egg retrieval, so Lynn's five eggs were fertilized with the sperm of the anonymous donor they had previously selected. Only two of the fertilized eggs resulted in viable embryos. Given the caliber of the embryos and Lynn's age, the doctors were recommending that both embryos be transferred to Lynn's uterus. However, the day before the embryos were to be transferred, the couple found themselves in a dilemma—with Bill insisting that only one embryo be transferred and Lynn feeling emotionally unprepared to go through with the transfer of embryos created with the DNA of a "complete stranger." The couple was unable to resolve their dilemma and time was of the essence, so they requested an emergency appointment with the clinic's consulting psychologist.

Three issues were identified at the outset of this session: Bill's impotence that resulted in the need to use donor sperm, Bill's reticence to transfer two embryos in case this resulted in a twin pregnancy, and Lynn's reluctance to go ahead with the transfer of the embryos created with anonymous donor sperm. To reduce the urgency of the decision regarding the transfer of the embryos, the therapist recommended that the two embryos be cryopreserved (frozen), thereby defusing the immediate emotional intensity of the situation and giving Bill and Lynn time to unpack and work through the various issues that were creating a dilemma for them. Although they were aware that frozen embryos are often not as successful as fresh embryos, they reluctantly agreed that they were not prepared to make such an important and potentially life-altering decision under pressure and were willing to accept the potentially reduced viability of the frozen embryos.

With the pressure off in terms of making an immediate decision about transferring the embryos, the therapist was able to assist the couple in prioritizing their treatment goals. An assessment of Bill's impotence—which was a concern for him—indicated that although he had previously experienced brief periods of erectile difficulties during times of severe stress (e.g., during his divorce), the onset of Bill's current erectile dysfunction followed his surprising diagnosis of male factor infertility. Considering the frequency with which men experience such episodic difficulties during the stresses of medical fertility testing and treatment (Moller, 2001; Shindel et al., 2008; Wischmann, 2010), the prognosis for successful treatment was good. However, given Lynn's age and her rising FSH levels, the couple agreed that addressing Bill's impotence was not a priority at this time.

The therapist reassured them that reduced sexual desire and episodic, situational bouts of impotence are a common consequence of the pressures experienced during the course of dealing with infertility and medical treatment (Hammer Burns, 2006; Leiblum, 1997; Wischmann, 2010). Bill and Lynn agreed to pursue sexual and relationship therapy in the future following termination of their fertility treatments if impotence 388

continued to be problematic for Bill. Both members of the couple acknowledged the toll infertility and medical treatment had taken on their sexual pleasure and desire and were keen to invest energy and time in rekindling their sexual passion once the issue of having children was resolved.

Treatment then turned to addressing the couple's reluctance to use the two embryos created with Lynn's eggs and anonymous donor sperm. Lynn wondered about her desire to become a mother and questioned Bill's commitment to becoming a parent again. For his part, Bill said he felt comfortable fathering a child that was not genetically his own, having already fathered two children, but he was not comfortable with the implications of a possible twin pregnancy if both embryos were successfully transferred to Lynn's uterus and resulted in a viable pregnancy.

The therapist created a validating, empathic, and safe space within which Bill and Lynn could talk openly to each other about their feelings and concerns related to their inability to produce a child together. Within this space, Lynn was able to acknowledge that as desperately as she wanted to have a child, that desire was inextricably linked to wanting to have Bill's child. She wanted to be a mother, but not at the price of Bill's having no genetic link to this child. When pressed by the therapist about why she agreed to select a donor as backup for IVF, she admitted that she honestly never felt that they would need to turn to that option—believing that on the day of retrieval, Bill's sperm would be sufficient to proceed with ICSI. She also acknowledged that she was

"extremely disappointed" and "devastated" when Bill was unable to produce a sperm sample the day of the retrieval.

In exploring Bill's commitment to being a father again, it became clear that he felt considerable guilt and responsibility for the couple's infertility and for the fact that his impotence forced them to turn to donor sperm. Not surprisingly, given the social and cultural links between masculinity and fertility (Daniluk, 1998), Bill's inability to produce a child with Lynn inevitably had a negative impact on his sexual self-esteem and sexual performance. Bill acknowledged that he felt he "owed it to Lynn" to go ahead with donor sperm as backup during their IVF treatment cycle and with the transfer of one of the two embryos. However, with deeper exploration it became apparent that he, too, was not comfortable fathering a child to whom he had no genetic connection.


Input:
  The following prompt could potentially generate the above section of the story:

Discuss the impact of chronic illness on sexual functioning and relationships. Include information on the prevalence of sexual dysfunction in chronic illness, the conceptual model for understanding the association between chronic illness and sexuality, and the classification of sexual problems affecting individuals with chronic illness. Also, discuss the physical, psychological, and relationship factors that affect the disease and the disease's impact on sexuality. Provide examples of how these factors can affect sexual functioning and experiences. Finally, discuss the importance of assessment and treatment in addressing sexual problems in individuals with chronic illness, including the distinction between validating and revalidating sexuality.

Response:
When challenged, Bill was able to see that his resistance to transferring the two embryos was less about the possibility of a twin pregnancy and more about being a genetic outsider in the family that he and Lynn were trying to create. As is common in cases in which the man's reproductive capacity is the source of the couple's infertility (Leiblum, 1997; Lotti et al., 2012; Wischmann, 2010), Bill took comfort in hearing from Lynn that she still perceived him as masculine and sexually desirable and in knowing that she wanted their relationship to continue more than she wanted to have a child that was not genetically his.

Within six therapy sessions, Lynn and Bill were able to work through their feelings about parenthood and concluded that they would attempt one more IVF–ICSI cycle, using only Bill's sperm. During the 4 weeks while they awaited the start of their next treatment cycle, Bill and Lynn were encouraged not to refrain from intercourse, as a way of separating "work sex" from sex for pleasure (Hammer Burns, 2006) and extinguishing 389

the pairing of intercourse with reproductive failure (Daniluk & Frances-Fischer, 2009).

The therapist used hypnosis to help Bill manage his anxiety about his ability to get an erection and provide a sperm sample at the time of treatment. Lynn and Bill were encouraged to select an erotic video and together to practice pairing the video with masturbation—so that Bill could use the video to assist him in producing a fresh sperm sample on the day of Lynn's egg retrieval. Arrangements were also made to use electro-ejaculation as a backup option, should the stress of the situation preclude Bill from being able to produce a sperm sample on the day of the retrieval.

Bill was able to produce a sperm sample, and embryos were created, but unfortunately these did not result in a viable pregnancy. Bill and Lynn terminated their fertility treatment efforts and took time to emotionally recover from their treatment ordeal. As is common when treatment has not been successful, Lynn in particular went through a period of intense grief during which any acts of intimacy were impossible for her for several months after treatment termination (Daniluk, 2001). As would be expected after the loss of a child, Bill and Lynn needed time to heal before they were able to reconnect with their own sense of sexuality separate from the process of procreation.

Approximately 18 months later, they sought therapy to help restore their sexual pleasure and intimacy and to resuscitate their sex life. Basson et al.'s (2005) model of the sexual responses of infertile women was a very useful tool in normalizing Lynn's diminished sexual desire as a consequence of infertility. Bill's impotence was no longer an issue, so treatment was focused on helping Lynn and Bill "explore and indulge sensuality for its own sake" (Leiblum, 1997, p. 163). Sensate focus exercises were used to help enhance their sexual intimacy and closeness while reducing the emphasis on all sexual encounters having to lead to, and end in, intercourse (Hammer Burns, 2006; Wischmann, 2010). As their comfort levels increased, Lynn and Bill were encouraged to incorporate fantasy, massage, erotic films, and toys into their sexual play. Also, they were asked to reflect on the activities and settings that resulted in sexual pleasure before their experience of infertility and were encouraged to incorporate some of these into their sexual lives again.

**EARLY INTERVENTION**

In light of the often negative, pervasive sexual legacy of infertility and medical treatment (Daniluk & Tench, 2007; Lenzi et al., 2003; Lotti et al., 2012; Marci et al., 2012; Sundby et al., 2007; Wirtberg et al., 2007), early intervention efforts might help to assuage the sexual toll of infertility (Vizheh et al., 2013). It would seem prudent to prepare couples for the potential strain this invasive, time-consuming, and protracted process will likely place on their sexual relationship and to normalize common difficulties encountered during treatment. Psychoeducation about ways a couple can keep their sex life fulfilling and intimate during infertility treatment may help to prevent more serious sexual problems from developing (Hammer Burns, 2006). Although we were unable to find any group or individual intervention programs focused specifically on the sexual health 390

and well-being of infertile couples, it may be useful to offer infertile individuals and couples an adapted version of Brotto, Basson, and Luria's (2008) mindfulness group intervention for treating sexual arousal disorders in women prior to beginning medical treatment. Such an approach, which attends to both the psychological and physiological reactions to the considerable stresses of infertility and involuntary childlessness, would provide a holistic and integrative way to potentially mitigate the sexual aftermath of infertility and can be used with individuals or couples.

**CONCLUSIONS**

There is no evidence that, prior to a diagnosis of infertility, couples have any higher rates of sexual dysfunction or distress than those in the general population (Leiblum, 1997). However, the stress of infertility and the invasiveness of medical treatments, the physical and emotional investment in having a child, the life-altering significance of treatment failure, the social and cultural associations between fertility and both masculinity and femininity, the shift in the purpose of sex from pleasure to procreation, and the pairing of intercourse with repeated reproductive failures will inevitably take a toll on individuals' feelings about themselves, their bodies, and their sexual self-esteem.

The experience will challenge all aspects of a couple's relationship and most certainly will affect their sexual desire and satisfaction. Sexual concerns and difficulties are reported by upward of 50–60% of men and women during medical fertility treatment (Möller, 2001). For many couples, the sexual aftermath can continue to play itself out in their relationships for many years following the termination of treatment (Daniluk & Tench, 2007; Schanz et al., 2011). Mental health professionals must understand the complex layers of the experience of being unable to produce a child and the lifelong implications of permanent involuntary childlessness if medical treatment fails. With time and our support, many couples can heal and move forward with renewed and even deeper intimacy and closeness after infertility.

**REFERENCES**

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.

Araoz, D. (2005). Hypnosis in human sexuality problems. American Journal of Clinical Hypnosis, 47, 229–242.

Basson, R., Brotto, L. A., Laan, E., Redmond, G., & Utian, W. H. (2005). Assessment and management of women's sexual dysfunctions: Problematic desire and arousal. Journal of Sexual Medicine, 2, 291–300.

Boivin, J. (2003). A review of psychosocial interventions in infertility. Social Science and Medicine, 57, 2325–2341.

Boivin, J., Scanlan, L. C., & Walker, S. M. (1999). Why are infertile patients not using psychosocial counselling?

Human Reproduction, 14, 1384–1391.

Brotto, L. A., Basson, R., & Luria, M. (2008). A mindfulness-based group psychoeducational intervention targeting sexual arousal disorders in women. Journal of Sexual Medicine, 5, 1646–1649.

Burns, L. H. (1993). An overview of the psychology of infertility: Comprehensive psychosocial history of infertility.

Infertility and Reproduction Medicine Clinics of North America, 4, 433–454.

Daniluk, J. C. (1998). Women's sexuality across the lifespan: Challenging myths, creating meanings. New York: 391

Guilford Press.

Daniluk, J. C. (2001). Reconstructing their lives: A longitudinal, qualitative analysis of the transition to biological childlessness for infertile couples. Journal of Counseling and Development, 79, 439–449.

Daniluk, J. C., & Frances-Fischer, J. E. (2009). A sensitive way to approach your infertile patients' concerns. Journal of Sexual and Reproductive Medicine, 7, 3–7.

Daniluk, J. C., & Tench, E. (2007). Long-term adjustment of infertile couples following unsuccessful medical intervention. Journal of Counseling and Development, 85, 89–100.

de Liz, T. M., & Strauss, B. (2005). Differential efficacy of group and individual/couple psychotherapy with infertile patients. Human Reproduction, 20, 1324–1332.

Derogatis, L. R. (1997). The Derogatis Interview for Sexual Functioning (DISF, DISF-SR): An introductory report.

Journal of Sex and Marital Therapy, 23, 291–304.

Haemmerli, K., Znoj, H., & Berger, T. (2010). Internet-based support for infertile patients: A randomized controlled study. Journal of Behavioral Medicine, 33, 135–146.

Hammer Burns, L. (2006). Sexual counseling and infertility. In S. N. Covington & L. Hammer Burns (Eds.), Infertility counseling: A comprehensive handbook for clinicians (2nd ed., pp. 212–235). New York: Cambridge University Press.

Keskin, U., Coksuer, H., Gungor, S., Ercan, C. M., Karasahin, K. E., & Baser, I. (2011). Differences in prevalence of sexual dysfunction between primary and secondary infertile women. Fertility and Sterility, 96, 1213–1217.

Keye, W. R. (2006). Medical aspects of infertility for the counselor. In S. N. Covington & L. Hammer Burns (Eds.), Infertility counseling: A comprehensive handbook for clinicians (2nd ed., pp. 20–36). New York: Cambridge University Press.

Leiblum, S. R. (1997). Love, sex and infertility: The impact of infertility on couples. In S. R. Leiblum (Ed.), Infertility: Psychological issues and coping strategies (pp. 149–166). New York: Wiley.

Lenzi, A., Lombardo, F., Saladone, P., Gandini, L., & Jannini, E. A. (2003). Stress, sexual dysfunctions, and male infertility. Journal of Endocrinological Investigation, 26, 72–76.

Lotti, F., Corona, G., Rastrelli, G., Forti, G., Jannini, E. A., & Maggi, M. (2012). Clinical correlates of erectile dysfunction and premature ejaculation in men with couple infertility. Journal of Sexual Medicine, 9, 2698–2707.

Marci, R., Graziano, A., Piva, I., Lo Monte, G., Soave, I., Giugliano, E., et al. (2012). Procreative sex in infertile couples: The decay of pleasure? Health and Quality of Life Outcomes, 10, 140–146.

Millheiser, L. S., Helmer, A. E., Quintero, R. B., Westphal, L. M., Milki, A. A., & Lathi, R. B. (2010). Is infertility a risk factor for female sexual dysfunction?: A case-control study. Fertility and Sterility, 94, 2022–2025.

Möller, A. (2001). Infertility and sexuality: An overview of the literature and clinical practice. Scandinavian Journal of Sexology, 4, 75–87.

Nelson, C. J., Shindel, A. W., Naughton, C. K., Ohebshalom, M., & Mulhall, J. P. (2008). Prevalence and predictors of sexual problems, relationship stress, and depression in female partners of infertile couples. Journal of Sexual Medicine, 5, 1907–1914.

Pepe, M. V., & Byrne, T. J. (2005). Women's perceptions of immediate and long-term effects of failed infertility treatment on marital and sexual satisfaction. Family Relations, 40, 303–309.

Rosen, R., Brown, C., Heiman, J., Leiblum, S., Meston, C. M., Shabsigh, R., et al. (2000). The Female Sexual Function Index (FSFI): A multidimensional self-report instrument for the assessment of female sexual function. Journal of Sex and Marital Therapy, 26, 191–208.

Rosen, R. C., Riley, A., Wagner, G., Osterloh, I. H., Kirkpatrick, J., & Mishra, A. (1997). The International Index of Erectile Function (IIEF): A multidimensional scale for assessment of erectile dysfunction. Urology, 49, 822–830.

Rust, J., & Golombok, S. (1985). The Golombok–Rust Inventory of Sexual Satisfaction (GRISS). British Journal of Clinical Psychology, 24, 63–64.

Schanz, S., Reimer, T., Eichner, M., Hautzinger, M., Hafner, H. M., & Fierlbeck, G. (2011). Long-term life and partnership satisfaction in infertile patients: A 5-year longitudinal study. Fertility and Sterility, 96, 416–421.

Schmidt, L., Holstein, B., Christensen, U., & Boivin, J. (2005). Does infertility cause marital benefit?: An epidemiological study of 2250 women and men in fertility treatment. Patient Education and Counseling, 59, 244–251.

Shindel, A. W., Nelson, C. J., Naughton, C. K., Ohebshalom, M., & Mulhall, J. P. (2008). Sexual function and quality of life in the male partner of infertile couples: Prevalence and correlates of dysfunction. Journal of Urology, 179, 1056–1059.

Sundby, J., Schmidt, L., Heldaas, K., Bugge, S., & Tanbo, T. (2007). Consequences of IVF among women: 10 years post-treatment. Journal of Psychosomatic Obstetrics and Gynecology, 28, 115–120.

Tuschen-Caffler, B., Florin, I., Krause, W., & Pook, M. (1999). Cognitive-behavioral therapy for idiopathic infertile couples. Psychotherapy and Psychosomatics, 68, 15–21.

Vizheh, M., Pakgohar, M., Babaei, G., & Ramezanzadeh, F. (2013). Effect of counseling on quality of marital 392

relationship of infertile couples: A randomized, controlled trial (RCT) study. Archives of Gynecology and Obstetrics, 287, 583–589.

Wirtberg, I., Moller, A., Hogstrom, L., Tronstad, S. E., & Lalos, A. (2007). Life 20 years after unsuccessful infertility treatment. Human Reproduction, 22, 598–604.

Wischmann, T. H. (2010). Sexual disorders in infertile couples. Journal of Sexual Medicine, 7, 1868–1876.

**Self Help Books/Resources For Patients**

Daniluk, J. C. (2004). Keeping your sex life alive while coping with infertility. Available at www.inciid.org/article.php?

cat=&id=263.

Nelson, T. (2008). Getting the sex you want. Beverly, MA: Quayside.

Weiner Davis, M. (2003). The sex-starved marriage. New York: Simon & Schuster.

1 In the case of patients dealing with age-related fertility declines and women diagnosed with premature ovarian failure, polysystic ovarian syndrome, or primary ovarian insufficiency, there will be greater urgency to continue with medical treatment.

393

**CHAPTER 20**

Sexuality in the Context of Chronic Illness

Paul Enzlin

**E** nzlin tells us "Chronic illness often requires those afflicted, and their partners, to cope with restrictions and/or changes in their sexual functioning and therefore necessarily alters the meaning and significance of their sexual experiences." Enzlin cautions sex therapists not to contribute to the "waiting-room culture" regarding sexual problems in the chronically ill, in which both patients and therapists wait for each other to raise the topic. Whereas much of the literature deals with the sexual consequences of specific illnesses, Enzlin takes on the ambitious challenge in this chapter of providing a conceptual model for understanding the association between chronic illness and sexuality. Noting that not every disease will affect every patient the same way, Enzlin's model identifies sexual consequences of illness that extend beyond the dysfunctions listed in DSM-5. These consequences include substantial changes in both the physical and interpersonal experience of sex. These experiential changes are often accompanied by other significant life changes, making the coping process difficult. Enzlin points out that sexuality may not be a high priority during the early and often intensive stages of treatment; however, at the appropriate time, sexuality may become an important contributor to quality of life. In addition to practical advice and guidelines, Enzlin encourages therapists and patients alike to focus on what is still possible, rather than what once was.

**Paul Enzlin, MSc, PhD,** is Associate Professor of Sexology and the Program Director of the Institute for Family and Sexuality Studies of the Department of Neurosciences at KU Leuven. Additionally, he is Head of the Sex Therapy Team at Context: Center for Couple, Family and Sex Therapy at UPC KU Leuven, in Leuven, Belgium.

Sexuality contributes to the quality of life for many individuals, and for many couples, it contributes to the quality and preservation of their relationship. However, 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. Although sexuality should be an important topic in clinical care, both clinical experience and research show that in medical and rehabilitation care it too often remains a neglected aspect of human health (Verschuren, Enzlin, Geertzen, Dijkstra, & Dekker, 2013).

The association between chronic illness and sexuality is complex. Much of the literature in this area offers descriptions of how and how often specific diseases may (negatively) affect sexual functioning (e.g., Comfort, 1978; Schover & Jensen, 1988; Sipski & Alexander, 1997; Gianotten, Meihuizen-de Regt, & Sons-Schoones, 2008; Stevenson & Elliott, 2007; Incrocci & Gianotten, 2008; Bancroft, 2009; Basson & Weijmar Schultz, 2007; Basson, Rees, Wang, Montejo, & Incrocci, 2010). However, the long list of sexual dysfunctions and problems that may occur in the context of illness makes it impossible to completely review this literature in a chapter of this length 394

(Basson & Weijmar Schultz, 2007; Gianotten et al., 2008; Verschuren, Enzlin, Dijkstra, Geertzen, & Dekker, 2010). Instead, this chapter offers a conceptual framework for understanding the association between illness and sexuality, both broadly defined. This conceptual framework is based on two premises: First, human sexuality is a complex phenomenon involving biological, psychological, relational and sociocultural factors (Bancroft, 2009). Second, illness not only refers to biological symptoms but also entails psychological, relational, and/or psychosocial pressures (see, e.g., Rolland, 1994).

**PREVALENCE OF SEXUAL DYSFUNCTION IN PEOPLE WITH**

**CHRONIC ILLNESS**

The available data on the prevalence of sexual dysfunction in chronic illness vary widely due to important methodological drawbacks (Verschuren et al., 2010). Research has largely focused on the prevalence of DSM-defined "sexual dysfunctions" (typically disorders of desire, arousal, and orgasm and pain disorders), usually without taking into account the distress criterion of the DSM. Historically, the literature has concentrated on erectile dysfunction (ED), ignoring other aspects of male sexuality and almost completely neglecting female sexual dysfunction. Furthermore, prevalence data are often based on uncontrolled studies that do not use standardized definitions or validated measurement of sexual dysfunction, thus limiting the conclusions that can be reached and hampering comparisons across studies. Importantly, the studies in this area typically address inadequately described populations in terms of degree, severity, and progression of disease, medication use, and psychological adjustment. Most, if not all, of the studies utilize retrospective designs, preventing conclusions about the temporal sequence between chronic disease and sexual problems. Unfortunately, research in this area has probably been hindered by a societal taboo that supports the idea that patients with a chronic disease are not "sexual beings" (Sipski & Alexander, 1997). The continuing dearth of sound research may perpetuate this notion.

**SEXUAL PROBLEMS IN CHRONIC ILLNESS**

Understanding sexuality in the context of illness necessitates expanding our definitions.

Sexual dysfunctions as defined in the DSM do not adequately encompass the range of sexual issues and concerns of individuals with chronic illnesses. In DSM-5 (American Psychiatric Association, 2013), a diagnosis of sexual dysfunction cannot be made if the problem (e.g., erectile dysfunction) is attributable to a medical condition. Medication-induced sexual dysfunction is, however, recognized as a distinct diagnosis and refers to the development of a sexual dysfunction subsequent to the use, change, or discontinuation of medication. The categorical nature of the DSM-defined sexual dysfunctions does not allow for sexual problems to be partially caused by medical 395

conditions or medications. As I discuss later in the chapter, it is unlikely that there is a single cause of a sexual dysfunction in a person with chronic illness.

An important caveat is that sexual dysfunctions and sexual problems may occur independently. To clarify this, we give two examples. A man with diabetes having ED

clearly has a sexual dysfunction, but when he and/or his partner experience this ED as very disturbing and problematic (e.g., because of their continued desire for penetrative sex), he also has a sexual problem. A young woman with breast cancer confronted with medication-induced premature menopause and consequent estrogen deficiency that leads to vaginal atrophy and dyspareunia who develops secondary vaginismus clearly has a sexual dysfunction, but when she and her partner enjoy other—non-penetration-based—forms of sexual stimulation, her vaginismus is not a sexual problem. The situation in which someone is sexually unhappy but has no apparent sexual dysfunction is referred to as "sexual dissatisfaction"—for example, sexual dissatisfaction can be due to the fact that the frequency of intercourse is too low (e.g., due to fatigue after chemotherapy), because the sexual contact does not meet expectations (e.g., due to inability to orgasm after a hysterectomy) or because the partner has extramarital affairs.

In short: not everyone with a sexual dysfunction has a sexual problem, and not everyone with a sexual problem has a sexual dysfunction, but they can also occur together (Fugl-Meyer & Sjögren, 1999, Fugl-Meyer, Hendrickx, Gijs, & Enzlin, 2012).

The following classification of sexual problems affecting individuals with chronic illness is by no means exhaustive, but it may serve as a starting point for discussion.

1\. Disruption in the experience of sexual pleasure.

a. Due to physical factors (e.g., diminished sensation during sexual intercourse as a result of neuropathy; hypersensitivity as a result of multiple sclerosis

[MS]).

b. Due to emotional factors (e.g., sex provokes feelings of sadness or mourning instead of pleasure and lust).

2\. Disruption of the sexual relationship. Although the overall quality of the relationship may be only slightly changed by the illness, the sexual relationship suffers from the consequences of the disease (e.g., uncertainty about the partner's interest or desire for sex).

3\. Sexual adjustment problems. Couples may experience difficulty adjusting to the changes needed for satisfying sex (e.g., a previously passive partner needs to become more active during sexual activity due to his/her partner's reduced mobility);

4\. Practical sexual problems (e.g., incontinence, fatigue) for which a couple may need help and/or an outside perspective to find a practical solution (e.g., encourage the couple to plan sex at a moment when the patient is most fit and is least impacted by a sedating medication; use pillows or bolsters to position the patient for intercourse).

5\. Disruption in sexual development. A disease may interrupt or interfere with a crucial stage of sexual maturation (e.g., puberty), resulting in deferred or delayed development of sexuality and sexual relationships (e.g., stunted growth due to 396

Crohn's disease, overprotective attitude of parents during adolescence; Bender, 2003).

**A CONCEPTUAL MODEL**

Each illness or chronic disease may have a direct and/or indirect impact on sexual functioning and sexual experiences (Bancroft, 2009; Stevenson & Elliott, 2007; Verschuren et al, 2010). The nature and course of the disease will partly determine whether, how and to what extent there will be an impact on sexuality. According to this model, a disease—whether congenital or acquired, whether physical or mental—may affect sexuality by affecting physical, psychological, and/or relational factors. Physical, psychological, and relationship factors also affect the disease in a reciprocal and constantly evolving dynamic that includes treatment and treatment compliance. Each component of the model is briefly described and discussed in the following subsections.

A detailed discussion of this model may be found in Verschuren et al. (2010).

**Physical Condition**

It is important to note that the link between illness and sexuality is not an inevitable one-to-one relationship: Not every patient with a particular disease will have the same problem(s). However, the impact of any illness or disease on sexuality is largely mediated by the impact of the disease on the physical condition of the patient. Disease-specific symptoms can have direct or indirect impacts on sexual function. For example, vulvar or penile cancer will directly affect sexual functioning, as will other diseases that affect the basic physiology required for sexual function (e.g., disease states that affect vasocongestion, such as congestive heart failure or hypertension; diseases that affect the central nervous system, such as multiple sclerosis or Parkinson's disease; illnesses that affect the musculoskeletal function, such as rheumatoid arthritis or muscular dystrophy; diseases that affect hormone functioning, such as prolactinoma). Examples of indirect impacts of diseases on sexual function include general comorbid consequences of a disease, such as chronic pain or fatigue, spasticity, or incontinence. Furthermore, patients are expected to adhere to (prescribed) treatment regimens in order to get control over the disease and to prevent potentially life-threatening complications (compliance). Patients who do not succeed in following the prescribed regimen (noncompliance) run the risk that the disease or complications will worsen, thus exacerbating the disease condition and its impact on sexuality. The treatments themselves may alter the physical condition of the individual and thus affect sexuality.

For example, removal of the prostate gland may directly affect the ability to ejaculate, whereas the removal of a testicle due to cancer may indirectly affect sexuality by its impact on body image. Pain, either from the disease itself or from the treatment, may be distracting or may induce severe fatigue, which might reduce sexual desire or even take 397

sexuality out of the picture. When the body constantly needs to avoid pain, the sufferer is distracted from sexual pleasure. Pain medication may also interfere with sexual function, pleasure, or both.

**Psychological Well-Being**

In this model, it is assumed that a person's physical condition has an influence on his or her psychological functioning, and vice versa. Aspects of psychological functioning with the most relevance to this model include acceptance of the disease, body image, self-esteem, and mood disorders. Each is considered separately here, with the understanding that the effects may be interactive.

**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 (McCracken, 1998; Van Damme, Crombez, Van Houdenhove, Mariman, & Michielsen, 2006). The process of acceptance is complex and is not a linear progression to an endpoint of absolute acceptance. Acceptance of a 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. Acceptance thus heavily relies on the strength of an individual and his or her ability to cope with the required changes in life. Acceptance has been hypothesized to be associated with sexuality (Rolland, 1994; Sipski & Alexander, 1997; Gianotten et al., 2008). It has been suggested that patients who have accepted their disease may have less trouble accepting the sexual sequelae of the disease and that the absence of sexual side effects may have a positive influence on the acceptance of the disease (e.g., Casier et al., 2008; Jensen et al., 1990).

**Body Image**

A chronic illness will often give rise to questions about one's own attractiveness (Helms, O'Hea, & Corso, 2008; Walker, 2009). In this respect, a distinction can be made between changes in appearance (e.g., mutilation after burns, trauma, amputations, operations) and changes in functioning (e.g., loss of control of movements in case of spasms), including impairments in basic bodily functions (e.g., incontinence with fear of

"accidents"). Given the association between body image and sexual functioning (Pujols, Meston, & Seal, 2009; Woertman & van den Brink, 2012), it is not surprising that some patients and/or partners may partially or totally avoid sexual activity due to changes in body image.

Impaired attraction due to physical changes may interfere with a patient's sexual 398

functioning and also with that of the partner. Factors that disrupt attractiveness (real or perceived) range from small but visible scars from surgery to full limb amputation, from the reduced mobility of an arthritic individual to the rigid movements of a patient with Parkinson's disease or the half-paralyzed body of the stroke patient, or from the increase in weight and sweat of patients who are taking antidepressants to incontinence or a leaking stoma.

For the individual with chronic illness, a diminished sense of attractiveness may make it more difficult to find or engage in an intimate relationship and/or may hinder the resumption of sexual activity in an existing relationship. Patients with distorted facial features (e.g., from muscle diseases, cerebral palsy, or burns) and with speech problems (e.g., cerebral palsy, cardiovascular accident (CVA), throat cancer) feel especially pessimistic regarding their chances to find a partner. But people with less severe disturbances in appearance also believe it is less likely that someone will fall in love with them.

**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 (Rolland, 1994). Very often this involves changes in social roles (e.g., roles as father, mother, spouse, partner, breadwinner, lover). The need to give up personal responsibilities can provoke feelings of loss of control and cause a feeling of dependence.

In these situations, two quite different reactions are possible. A number of patients will continue to embrace and fight for the preservation of some or all of these personal responsibilities, whereas others completely let go and surrender all responsibility and control to their caregiver(s). The fact that one is less able to take up certain roles may give rise to a degree of uncertainty regarding self-worth that may contribute to the development or maintenance of sexual problems. Moreover, when sexual dysfunctions and/or fertility problems result from the illness, more fundamental doubts and questions about sexual identity and desirability may occur.

**Mood Disorders**

Confrontation with a chronic illness often initiates a grief reaction as patients take leave of their healthy bodies and pace of life and must rethink and/or give up a number of plans they had in their lives. In other words, a chronic disease often compels people to make changes in their identities, inducing a shift in priorities and necessitating finding new meaning in their lives. They must gradually learn to accept what they can and cannot do and learn to live with changed bodies that are less reliable and less controllable.

Patients with chronic diseases often develop mood disorders, including depression 399

and anxiety disorders (Roy & Lloyd, 2012; Walker et al., 2013; Ziemssen, 2009). It has been estimated that depression and anxiety disorders are 1.5 to 4 times more common in people with a chronic disease (Rodin, 2007). It is important to note that the association between illness and depression–anxiety may vary per type of illness and treatment protocol. As depression and anxiety affect quality of life in general, they also affect sexuality both in terms of functioning and experience. Psychotropic medications used to treat mood disorders often have sexual side effects. It will be difficult to tease apart the cause of sexual problems in patients with chronic illness and comorbid mood disorders.

**Relationship Factors**

In terms of the impact of illness on a relationship, it is important to distinguish between relationships that started before and after the onset of the disease. The individual who opts for an ill partner accepts the "person-with-the-disease." This person will learn from the beginning of the relationship how the disease and its treatment may affect daily life

—including sexuality—and can prepare for a life with an ill partner. However, 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- or herself. From one moment to the next, one is no longer married to the healthy partner he or she chose but to a partner with an illness. This requires from both partners not only some grief and mourning work—to say good-bye to the healthy body and/or the healthy partner—but also high adaptability to the new situation with changed responsibilities and roles (sexual and otherwise).

The extent to which a chronic illness is experienced as limiting within a relationship also depends on the couple's position in the lifecycle. When illness strikes a young person just starting a career and a family, the impact and the adjustment required will be significantly different from those of the retired or elderly person struck by disease (Dracup et al., 2004). The impact of illness on a relationship is also determined by the nature of the disease. In the case of a stable condition (e.g., lower limb amputation), a couple may learn to adapt and may experiment with new possibilities in terms of sexuality. The unpredictable nature of progressive diseases (e.g., multiple sclerosis, dementia, Parkinson's disease, Huntington's disease) is a source of uncertainty for both patients and partners. Progressive chronic diseases create uncertainty not only regarding the timing of the next breakthrough or step but also about the implications of renewed disease activity, such as functional limitations or pain that may negatively influence sexual functioning and sexual experience.

In couples in which one partner has an illness or disability, it is almost inevitable that at least some care will be given at home by the partner. The possibility, chance, or obligation to care for someone may have both negative and positive effects for the patient, the partner, and the relationship (see, e.g., Harrison, Stuifbergen, Adachi, & Becker, 2004). 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" (Lukkarinen & Kyngäs, 400

2003). Feeling helpless and hopeless about the situation may lead to depression in the well partner. It is also not uncommon for the well partner to experience fatigue and poor health as a result of taking on additional responsibilities. Partners who are well frequently report that they do not dare discuss their own concerns (e.g., about the drop in sexual frequency) with their partners lest they hurt them. Partners may also stop initiating sexual activity to spare the partner who is ill. Often this leads to a narrowing and rigidity of roles in the relationship, with the role of the partner being reduced to one of caregiver and that of the partner with an illness being restricted to feelings and behaviors associated with "being ill." If this type of polarization occurs in a couple, it may increase emotional distance between them, and a feeling of alienation may arise.

Consequently, passion and feelings of sexual attraction may disappear.

Partners often feel anxious when dealing with partners who are newly ill (see, e.g., Miller & Timson, 2004). A heightened sensitivity to the patient's experience of physical pain, emotional problems, and depressed or anxious mood may blind them to their partners' continued sexual interest. However, the well partner's estimation of the situation is not always accurate. A misjudgment of the circumstances or the mood of the ill partner may exacerbate the uncertainty about the best way of interacting. In the long run, this may give rise to conflicts in the couple that may hinder their sexual expression.

Sometimes patients and/or partners use the chronic illness as an alibi or justification to end an existing unsatisfying sexual relationship. Sometimes a chronic disease is the starting point of an extramarital affair. The way couples cope with the changes necessitated by the disease will depend on their relational skills, including communication, social and problem-solving and conflict-management skills. These relational qualities may be protective against the development of sexual problems. The prognosis for sexual well-being is improved when the partner is better able to cope with the consequences of the disease (Brotto & Kingsberg, 2010).

**SEXUALITY AND SEXUAL DEVELOPMENT IN THE CONTEXT OF**

**CONGENITAL DISEASE**

Typically, people with a history of chronic illness that required extensive physical care (e.g., from parents, nurses, doctors) have learned to experience their own bodies as objectified, sexless, and genderless "things" that must be cared for (by others). In the end, this experience may induce a kind of "learned sexlessness" such that when sexual feelings occur, they may no longer be recognized (Meihuizen-de Regt, Wiegerink, & van der Doef, 2008; Veldman, 2004). Moreover, parents may be more reluctant to promote independence and autonomy in children with chronic illness. As a result, these children may have less opportunity to develop contacts with (healthy) peers, to experiment with all kinds of sexual behavior, or to independently discover the world (of dating relationships). Indeed, a clearly visible illness or disability may lead to uncertainty about one's attractiveness to potential partners and may act as a further barrier to establishing relationships. An invisible illness, however, may also raise uncertainty and questions 401

about when—in a new or growing relationship—it is best to communicate about the disease and its (sexual) consequences. Even if the illness has been resolved (treated, stabilized, or cured) in adulthood, a history of childhood or adolescent illness may affect later sexual relationships.

**BREAKING THE CONSPIRACY OF SILENCE**

In medical and rehabilitation centers there is often a "waiting-room culture" based on a

"conspiracy of silence" between both patients and professionals. 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 a patient does not ask or when the patient has no partner. In the first therapeutic encounter, patients or couples may not readily discuss sexual concerns because the recent diagnosis of a serious illness has relegated sexuality to a lesser priority. Based on their clinical experience, Ramakers and Jacobs (2008) describe four stages typical of many couples. The first is a phase of absence, in which patient and partner are not thinking about sexuality. This is followed by a phase of uncertainty about sexuality (e.g., "What is still possible?"; "What do I want in this respect?"; "Am I still attractive/attracted to my partner?"). The third phase is one of sexual opportunities during which partners try to reshape their sexual relationship.

Finally, a phase of sexual stability in which a new—active or inactive—homeostasis is achieved. Because both partners may not progress through the stages at the same pace, it is important to determine whether the patient and partner have the same expectancies regarding the resumption of sexual interaction. However, when the topic of sexuality is raised at the beginning of therapy, both patients and partners will be more comfortable raising sexual concerns when relevant.

**ASSESSMENT**

In clinical practice, the central diagnostic question in sex therapy for couples confronted with chronic illness is "Which potentially modifiable behavioral, psychosocial, physical, and treatment factors are involved in the beginning, course, and maintenance of sexual dysfunctions, problems, and worries?" In addition to a generic sexual history, relevant questions might include the following:

1\. Are the sexual dysfunctions and/or impaired sexual experiences

a. the direct result of physical aspects of the disease (e.g., ED secondary to Peyronie's Disease);

b. the indirect result of physical complications of the disease (e.g., paralysis, contractures, spasticity, incontinence, or pain);

c. the indirect result of illness-related psychological mechanisms (e.g., 402

depression, anxiety, low self-esteem);

d. iatrogenic in origin (e.g., due to surgery, medication, chemo- or radiotherapy, prescribed behavior)?

2\. Are there any other relevant factors resulting from the disease such as physical appearance, cognitive disturbances, impaired fertility, and so forth, that may affect sexual functioning and/or sexual experiences?

3\. 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.)

4\. 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 (e.g., is the reduced mobility of a patient with rheumatoid arthritis a problem for the patient and/or the partner, who may enjoy being more active?).

Apart from this "narrative" history, additional physical examinations (e.g., to exclude a vaginal infection in the diagnosis of pain during intercourse or to assess pelvic floor muscle tension) and laboratory testing (e.g., to investigate hormonal parameters) may be needed. It is important to discuss the necessity of the additional tests with the patient, as in most cases patients have already undergone numerous medical investigations (Van Lunsen, Weijenborg, Vroege, Brewaeys, & Meinhardt, 2004).

The use of standardized questionnaires (e.g., Female Sexual Function Index [FSFI], Female Sexual Distress Scale [FSDS], Golombok–Rust Inventory of Sexual Satisfaction

[GRISS], International Index of Erectile Function [IIEF/IIEF-5], Sexual Self-Consciousness Scale [SSCS]), with a population with a chronic illness is of questionable utility. The psychometric qualities of most, if not all, of these measures have been studied in a healthy population, so there is a lack of normative information for the chronically ill. At present, a thorough sexual history, obtained through clinical interview, is the most appropriate diagnostic tool for the population with chronic illness.

**TREATMENT**

**Validating and Revalidating Sexuality**

A distinction should be made between "validating sexuality" and "revalidating sexuality"

(Bender & Gianotten, 2008). "Validating sexuality" refers to helping patients whose sexual development was hindered by chronic illness. Often these patients have had little or no sexual experience. Thus, in a validating approach, the aim is to help the patient gain a more positive view of his or her possibilities for relationships and sexuality. The goal of therapy is the development of a positive sexual identity such that the patient may achieve his or her optimal level of sexual functioning, given the constraints of his or her illness (Bender & Gianotten, 2008).

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Case Vignette (Validating Sexuality)

Jane was a 24-year-old engineer with the presenting complaint of anxiety about her sexuality. She had never been in a sexual relationship. Jane had been diagnosed with diabetes mellitus Type I at the age of 4. Throughout her childhood and adolescence, Jane's mother was extremely anxious about controlling her daughter's diabetes, as she had witnessed her own mother's health deteriorate due to the same illness. As a consequence, Jane's mother was extremely overprotective; Jane was not allowed to go to birthday parties, to play at friends' houses, or to date. Not surprisingly, Jane often felt lonely. However, Jane compensated for her lack of social interaction by working hard and excelling at school. Being an only child, Jane was accustomed to creating her own world into which she often withdrew. However, when finishing her studies at the school of engineering, she noticed many of her classmates starting to cohabit or even marry, and she "suddenly" became aware of her social isolation. Jane felt sad and uncertain about the possibility of ever having a partner. In the sessions, we discussed her lost opportunity to experiment with relationships and sexuality. After an initial phase in which we focused on her sadness (about that lost opportunity) and anger (at her mother, her illness, and her own lack of pubertal opposition), she slowly came to accept the importance and value of a partner relationship and came to view sexuality as a normal part of life. She felt more confident about her ability to enter into a relationship, even though she was reluctant to have to explain "the whole issue about diabetes again and again." Finally, after 18 months of therapy and discussion about how and where to find a partner, Jane succeeded in having her first relationship.

"Revalidating sexuality" is what is most often recognized as sex therapy in the context of chronic illness. It refers to helping individuals—whose sexual development occurred prior to their illness—overcome the sexual limitations they experienced subsequent to their diagnosis and/or treatment. This perspective is aimed at helping people cope with the changes needed to regain a satisfying sex life. This approach aims at an optimal adjustment to the illness or at finding a solution for a particular sexual concern.