Paul Enzlin1, 2 , Kristel Mulders2 and Hilde Toelen2
(1)
Department of Neurosciences, KU Leuven, Institute for Family and Sexuality Studies, Leuven, Belgium
(2)
Centre for Clinical Sexology and Sex Therapy (UPC KU Leuven), Leuven, Belgium
Paul Enzlin
Email: paul.enzlin@upckuleuven.be
30.1 Introduction
In line with the idea that cancer and sexuality are in fact “relationship issues,” this chapter focuses on an often forgotten but important special group: the partner. For those in a partner relationship, the cancer diagnosis suddenly confronts not only the patient but also the partner with an unexpected and threatening event that creates uncertainties about aspects of (quality of) life and death. For the (healthy) partner, a cancer diagnosis implies that from one moment to the other, she or he is no longer married to the once chosen healthy partner, but to an ill-healthy partner. This requires from both patient and partner not only a mourning process (mourning about losing a healthy body and a healthy partner), but also an important adaptation to the new situation with modified roles and tasks.
This chapter will discuss the impact of changes on the partner’s sexuality and put the partner’s perspective in a broader context. We assume that the information below is valid for heterosexual as well as nonheterosexual relationships.
30.2 Changes on the Partner’s Sexuality
When cancer can have a negative impact on sexuality in general, it may also have an impact on sexual functioning and sexual experience of partners. During the diagnostic and the early and most intensive treatment phases, sexuality seems to be less relevant for the majority of partners as they are especially preoccupied by the fear of losing their partner [1]. In the aftermath of the treatment phase, sexuality progressively regains its importance in most couples. However, while many partners accept the decrease and/or changes in their sexual relationship, they still may feel disappointed, angry, and sad about this, because at the same time, they are aware that sexuality is an important part of their life [2, 3].
After cancer, most couples hope to regain a level of “sexual normality,” but very often they have difficulties to restart their sexual life. These (re)starting problems are due to a lack of sexual initiation of both partners, because they both seem to wait for the other’s initiative. From the partner’s perspective, it was found that their sexual experiences were shaped by the absence of desire in the ill-health partner [3, 4] and that their frequency of initiating sexual activity depended on the patient’s initiative [5]. The most commonly expressed reasons of fear to initiate sexual activity by partners are: fear to hurt the patient, the feeling that initiating sex is inappropriate, feelings of guilt about their own sexual needs, and fear of (repeated) rejection. A consequence of (repeated) rejection by the patient is that partners reported to feel undesired and unattractive, and therefore they experienced a decrease in their own sex drive and a lack of affection [4]. For some couples, the sequelae of cancer result in a complete cessation of sex. In this respect, an interesting gender difference was seen. When intercourse was no longer possible, female partners reported that they did not really search for sexual alternatives but looked for more nonsexual intimacy such as hugging and cuddling. Male partners, however, reported to compensate for the decrease in partnered sexual activity by an increased frequency of masturbation, and they struggled harder with how to retain intimacy and feelings of closeness when the usual sexual routines were interrupted [6]. This shows that the prescribed sociocultural scripts for men––that is, be active, able to perform, and to penetrate––and women––that is, be passive, not take initiative, and comfort their partner––can negatively impact sexual recovery of heterosexual, homosexual, and bisexual couples after cancer.
When couples are able to (re)negotiate and (re)start sexual activity, partners reported changes in all domains of sexual functioning. Partners most commonly reported a decrease in sexual desire for which several reasons were given:
1. (a)
2. (b)
3. (c)
However, we should be aware that loss of sexual desire can also be a symptom of depression or anxiety. Besides, male partners also report a decreased ability to respond sexually, meaning erectile dysfunction [6]. All these changes in sexual functioning and sexual experience may result in a decreased frequency of intercourse (21–39 %) [3, 4]. Changes in sexual functioning, sexual experience, and sexual frequency may also have ramifications beyond sex as an activity. Such changes can also diminish other expressions of intimacy such as affectionate physical contact and closeness––not seldom because one or both partners (fearfully) perceive that this necessarily should lead to sexual intercourse. Especially in younger couples, this myth may undermine expressing and enjoying sexuality.
30.3 Partners, Cancer, and Sexuality: The Broader Perspective
Changes in sexual relationships of couples confronted with cancer occur in a broader context of several experiences of change in partners. In many patient-centered models of cancer care, the partner does not receive much attention. So, this paragraph will discuss two specific elements that influence partners of patients with cancer:
1. (a)
2. (b)
30.3.1 Partners Are Important “Partners” in Cancer Care
In the current organization of cancer care in Western countries, quite an important part of care and support is given at home. This means that partners probably spend more time in caring for and supporting their ill-health partners than health professionals. The possibility, opportunity, duty, or obligation to care for a partner with cancer can have both negative and positive effects on the patient, on the partner, and on the relationship. Partners describe caring for the patient with cancer as a heavy responsibility and seem to face numerous difficulties as reflected in partners reporting more psychological distress and a lower quality of life compared to the patients themselves [7]. Many caring partners, however, do not dare to talk openly about the impact of the cancer diagnosis and treatment on their life––as if they have no right to complain because they do not have cancer. The experience of partners caring for a cancer patient is being described as a “limited” and “uncertain” life [8].
30.3.1.1 Limited Life
In case of cancer, the caring partners express a loss of personal freedom reflecting a “limited life” [8]. This limited life is felt both in terms of communication––for example, partners do not (dare to) say anything about themselves out of fear to hurt the ill-health partner––and in terms of doing––for example, many partners take over household tasks to help and spare the ill-health partner. The perception that one has to gradually take over several tasks and the confrontation with the reduced capacities of the patient results in partners expressing that there is less space for impulsivity. Such loss of impulsivity may result in a narrowing of the roles in a relationship with the role of the healthy partner being reduced to that of “caregiver” and the role of the cancer patient being reduced to that of the “ill partner” who may only feel and behave as being ill. Such polarization of roles between partners may create emotional distance, which can negatively affect the partner relationship, including the capacity to see the patient as a sexually attractive person or to experience the interaction with her or him as erotic.
Moreover, constantly being responsible for good care can (literally) exhaust the partner. Despite the physical need for rest and relaxation, many partners carry on the caring tasks to avoid disappointing the other. This stressful situation is for some partners the reason to ask for help in the (family) environment or to step to professional help for support. Getting support from someone outside the family can not only bring relief to the partner but may also be helpful in finding a new life perspective in which there is a more healthy balance between “togetherness” and “separateness” [9]. Separateness should enable healthy partners––just as in other relationships––to further personally develop themselves and engage in own interest activities apart from caring for the partner. This could again be helpful in regaining sufficient energy to continue caring for the partner.
30.3.1.2 Uncertain Life
The unpredictable nature of cancer is a source of uncertainty due to which partners express their life as being “uncertain” [8]. Health care professionals may be helpful in preventing and overcoming cancer-related uncertainty in partners by giving sufficient and accurate information about the (expected) evolution and prognosis of the disease. Partners not only want to be informed about but also be involved in the treatment, for example, by attending the consultation, because this can eliminate their uncertainty and can help them understand how to deal with the disease and the patient [9]. Indeed, partners express feeling uncertain about how to react to the ill-health partner, and even while they try to be sensitive to the physical pain, emotional problems, and mood of the patients, their assessment of the patient and the situation might still not always be accurate. A (repeatedly) wrong interpretation of the situation or the mood of the ill partner may be experienced by both as disappointing, and it can increasingly make the partner uncertain about how to deal with the patient. This confusion on how to react may be exacerbated when the patient refuses to communicate with the partner about the disease or the treatment or about what it means to have cancer. In these situations, partners often feel even more frustrated because they realize being excluded from the patient’s emotional life [9]. On the other hand, partners themselves may also use strategies of “protective buffering” and avoid open communication about their needs and feelings. This also may lead to emotional distance and a feeling of lack of caring for each other between partners. Such cancer-related uncertainties characterizing the emotional world of both patient and partner may hinder the expression of emotional and physical intimacy––including sexuality––between partners.
30.3.1.3 Emotional Problems
When partners experience a “limited” and “uncertain” life, they regularly develop emotional problems. Such emotional problems are more likely to occur when partners feel less in control, more helpless, and hopeless, as this may result in worse psychosocial adjustment, less self-confidence, and more stress, anxiety, and depression. Moreover, the changes in emotional balance and search for a new lifestyle are a big source of stress between partners, because they feel torn between feelings of hope and fear [8, 9]. Hope arises when there are signs of recovery or stabilization which gives rise to a calmer and more balanced period. Fear comes as a result of signs of deterioration and stems from negative thoughts about the future course of the disease and the realization that the relationship will never again be as before. The changes in lifestyle experienced by partners as being stressful include, for example, the unfair (re)distribution of household responsibilities, the refusal of the patient to communicate, and changes in parenting style such as a lack of patience toward the children. In stressful periods, anger and fatigue might steer partners to blame the patient and even about the fact that the disease also affects their own health. Especially, older partners are worried about their own health and wonder what would happen if they would also become ill.
These all suggest that when part of the cancer care is shifted to the partner, it is important for the health care system to also provide emotional support for him or her because that support seems a key factor in properly coping with the cancer situation.
30.3.2 The Physical and Emotional Impact of Cancer Treatment
It will be clear that various cancer types (e.g., nonreproductive versus reproductive cancers; cancers with a worse or better prognosis) and various treatments (e.g., chemotherapy, radiotherapy, and surgery, e.g., lumpectomy versus mastectomy) will have a different impact on the emotional and sexual life of partners. Partners report to experience physical barriers to sex, due to hormonal treatment that has the effect of chemical castration, or due to physical impairments (e.g., unable to position themselves for sex, or less sexual self-confidence with a colostomy). Moreover, at another level, partners describe pain, fatigue, exhaustion, and low self-esteem of the patient. As a result, they may not touch certain areas of the patient’s body, or it has to be done very carefully making sexual intimacy less spontaneous. All these physical barriers aggravate for both the healthy and the ill partner the steps to initiate or reinitiate sex.
Together with the abovementioned emotional impact, the sexual sequelae may result in (even) more emotional distance between partners that may negatively impact the intimate relationship. Indeed, sexual problems and problems with showing affection are among the most mentioned marital problems in couples with an ill-healthy partner [10].
Sexual dissatisfaction may be a reflection of decreased relationship quality induced by changed feelings toward the patient or loss of physical attractiveness. In becoming a caregiver, the partner can have lost the feeling of being also a sexual partner. Reduction of sexual contact can also be caused by a decreased interest in and pleasure of sexuality––whether or not due to a cancer-related sexual dysfunction––or due to fear to bother or cause more pain in the patient [7]. Dissatisfaction with sexual life may in some couples be related to the fact that they have difficulties with showing affection [7], while physical closeness may be very important for the well-being of both partners.
Sometimes, the cancer can also be used by a partner as an alibi to end an existing unsatisfactory (sexual) relationship or the start of an extramarital affair in which both sexual and emotional needs can be satisfied.
30.4 Partners, Cancer, and Sexuality: Positive Aspects
Many partners experience that––apart from negative aspects––caring for the partner can also have a positive meaning. After a period of adjustment in which the busy work-oriented lifestyle was progressively abandoned, a number of partners learn to accept the cancer as a part of life. When in such context a new relational balance is found, partners can be extremely satisfied with the new situation, because great importance is being attached to the care and concern shown to each other [8]. Some partners indicate that the disease process gave a (new) meaning to their lives and that it has positively influenced their (quality of) life. Caring for the beloved patient creates for some partners a greater self-esteem: caring for their partner gives them satisfaction as they feel more connected [7]. Many caring partners also admire their ill partner for their ability to manage their disease and how they cope with “being ill.” Partners also often describe the ill partner in a positive way as someone who is very strong, brave, friendly, independent, quiet, and patient. This shows that the confrontation with a cancer diagnosis also carries in itself a chance to relational growth with acceptance of the changed sexual relationship and an increase in closeness and intimacy.
Conclusion
This chapter focused on the partner perspective starting from the observation that partners are important––but often forgotten––“partners” in cancer care. It clearly shows that cancer also has an important impact on the partner’s emotional, sexual, and relational experiences and that partner’s emotional, intimate, and sexual needs deserve more specific attention in cancer care. This suggests that the partner’s perspective should be more included in advice and supportive interventions for both the patient and partner. Communication about cancer between health care professionals and both patient and partner may help the couple to (re)negotiate their (emotional, intimate, and sexual) relationship.
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