“To have and to hold from this day forward, for better, for worse, for richer, for poorer in sickness and in health while we both shall live.”
Commitment ceremonies often include vows to stay together even during times of tremendous adversity. The vows often bring tears to the individuals who speak them as well as to the community of witnesses, but the real power of these words may not be fully appreciated until a traumatic event, like cancer, brings a deeper meaning to these vows and challenges a couple’s relationship. Cancer is a couple’s disease. It affects the psychological well being of each person, requires both partners to utilize coping strategies, and can affect the dynamic relationship between partners.
We know that couple dyads that have higher levels of satisfaction in their relationship and a stronger relationship prior to the diagnosis tend to cope with illness better than couples who have more relationship difficulties. Coping is also affected by the amount of overall concurrent stress. For example, increased levels of financial, work or family stress can negatively affect how couples cope with the disease. There is strong evidence that each member of the couple dyad is affected by cancer in different ways and the means by which they cope may also vary.
When an individual is diagnosed with cancer, the partner is usually counted upon to be the primary helper. As the primary helper, the well partner is expected to offer emotional support, help negotiate the illness, adapt to the lifestyle changes brought about by the illness, minimize the impact of the cancer, be future oriented and, of course, also be sensitive to the needs of the patient. These are high expectations that many partners want to meet, but may not be fully capable to do so. In addition, there can be significant personal costs.
The distress on the patient caused by cancer has been well documented, but we know that a cancer diagnosis also creates distress for the partner. The well partner worries that their partner may die, wants to make the patient healthy again and struggles to meet the emotional stress of living with uncertainty. The well partner needs support, but the person to whom he or she would normally turn, the patient in the dyad, is often too overwhelmed by the cancer experience and has few resources to help the well partner cope. This can change the dynamic of the relationship; the well partner cannot rely upon the sick partner for support, or at least not to the extent that he or she may have prior to the diagnosis. The well partner may be forced to put his or her own shock and trauma aside in order to provide comfort, help, protection and care. For these reasons we need to provide support not just for the patient, but for the couple.
Researchers have documented gender differences in coping. Because much of the research has been conducted in the breast cancer community, researchers have studied well male partners more frequently than they have studied female well partners of men with cancer. They have found that supportive behaviors on the part of the spouse are very important in helping female patients lower their overall distress while for male patients, distress was not reduced by their partner’s supportive behaviors. However, negative behavior by the partner was consistently detrimental to the patient’s psychological well being, regardless of gender. Women caregivers tend to report more distress, sometimes more than the patients do. Research evaluating the amount of time spent in caretaking found that women spent twice as many hours caring for their husbands as did husbands caring for their wives. Furthermore, women were more likely to be the sole caregiver and were more likely to quit their outside jobs or reduce their work hours to accommodate the caregiving needs of their partner. Male partners, regardless of age, were more likely to delegate household tasks to a third party. These differences suggest the need for different types of interventions depending on whether the patient is a woman or a man and illustrates how important it may be to look at how each dyad is coping with these issues.
The stress of cancer is often intensive at the initial diagnosis. Data suggest that recurrence is also highly distressing for both patient and partner. The partners of patients with recurrent cancer often report more depression than at the time of initial diagnosis. Further, these partners experience a greater impact on their daily life as well as on their own health compared to partners of patients with newly diagnosed cancer, even though the partners are providing similar amounts of assistance. Couples faced with advanced cancer report more day-to-day difficulties, increased restrictions on activities, more side effects of treatments and significant worry about the future.
There is some evidence to suggest that well male partners experience more significant depressive symptoms when their female partner has a recurrence. This may be because men often have a smaller social support network. Patients and their partners have cited social support as the number one factor that facilitates coping. Also, any activities that minimize the impact of the cancer on everyday life appear to be beneficial. Some individuals use negative coping skills such as the use of escape and avoidance. Avoidance can be characterized by sleeping more than usual, taking medications or using alcohol, or not telling your partner how and what you are feeling.
For some couples getting through the initial diagnosis and treatment can have its rewards. There is a growing body of literature, based primarily on breast cancer patients and their partners, that suggests the cancer experience can be a catalyst to positive growth. In formal psychological literature these changes are called “Post-traumatic Growth Experience.” In one study that evaluated husbands, 88% reported positive changes, including enhanced interpersonal relationships and a greater appreciation of life, following the wife’s breast cancer. Again, social support appears to be an important factor for both patients and partners. Husbands who felt more global social support, acceptance, validation and comfort appear to be more likely to grow from the experience. Finding meaning in the experience is, however, an interrelated process in which the partner’s growth seems to be tied to the patient’s growth. What becomes important about this work is that couples face cancer and they share the pain together, but they also have the potential to share in the gain from the trauma.
Problems and Solutions
Keeping a relationship healthy through the cancer experience is no small challenge but healing an ailing relationship can be even more daunting. Let’s begin by considering some of the common problems faced by couples with an eye toward some solutions. I have listed some common problem areas for couples dealing with the cancer experience and presented a few ideas to help facilitate coping, healing and growth. The foundation for almost all positive change is open communication and a desire to work together for positive gain. Cancer can be a stimulus for change.
Pick up any book about relationships and you will find the ubiquitous chapter on communication. When communication breaks down problems inevitably ensue. When communication is facilitated, and individuals feel understood and supported, then problem-resolution can begin. Good communication facilitates intimacy.
The idea of communication is simple and yet it can be a significant problem during the cancer experience. Communication breaks down because of the stressors of cancer and the caretaking that is required. Communication stops because the business of cancer is more important. Communication is deferred because there is no time to share. Communication is suspended because you’re afraid of saying what is on your mind or you may try to protect your partner from your deepest feelings. There is an endless list of reasons why you don’t talk about your feelings. Regardless of why, the result is that communication is lost.
One of the most important tools that couples can use during their cancer experience is their skill in communication. Good communication involves both talking and listening. Understanding the other person’s thoughts and feelings and giving space for each individual’s concerns is the heart of good communication. A seemingly simple exercise involving taking turns talking and listening can be helpful. This technique can facilitate understanding and may be the beginning of developing a more positive interaction between patient and partner.
Communication Exercise. On separate days, each member of the dyad can take a turn being the talker or the listener. The talker chooses something that he or she would like the listener to understand about him or herself. The talker is given 15 minutes, set by a timer, to just talk about that issue or topic. The talker must refer to his or her own feelings and uses “I” statements. The idea is to communicate your own feelings in a way that will help your partner know and understand you. The listener actively listens. He or she does this by making eye contact, with non-verbal cues such as head nods. The listener does not speak during that 15 minute period, just listens. At the end, the listener takes about five minutes to summarize what the talker said and is feeling. The talker does not evaluate, respond, judge or criticize what the listener said. The listener tries to do the best job he or she can to really understand what the talker said. On another day, these roles are switched. Over time, this very basic exercise can help couples understand each other better. In an ideal world, each person would want to find ways to respond to the emotions and needs of their partner through actions.
Conflicts over Fix it versus Understand it
Many times when you are distressed, your partner immediately wants to find solutions to the problems. Finding solutions is a very good skill; however, there are times when solutions may come too early in the process. Oftentimes, emotions need to be expressed and individuals need to be heard and understood. Expressing your emotions can help you relieve pressure and process the experience. Couples that are sensitive to each other’s styles may find that things go more smoothly when time is given to the expression of emotions, frustrations, pain, and distress. After emotions are expressed both parties may be able to engage more fully in the problem resolution phase. We know that women tend to respond to the supportive behaviors of their partner, so male partners may want to start by listening and understanding before attempting to solve the problem.
Lack of appreciation
In most relationships there are times when one partner feels that they are giving more or may feel unappreciated for what they contribute. Feeling unappreciated can leave you feeling sad, alone, angry and ultimately resentful. Patient with cancer often feel that there is never enough being done to help them; the experience of cancer is so draining and overwhelming that any gestures simply feel meager. On the other hand, for the caregiving partner there is often a feeling that no matter how hard one tries they just cannot meet their partner’s needs and they feel unappreciated. Separating the reality from the perception of the situation becomes complicated and feelings are often at the root. There are several interventions that may be helpful. First, it is important that each member of the couple really try to identify ways in which the other person is helping them through this process. Once you notice these efforts, make sure you tell the other person each time he or she does something that feels good or is helpful. It is essential to reinforce positive behaviors. Sometimes it is tempting to thank someone and then add a complaint or criticism to the end. This will negate the recognition. It is more helpful to reinforce the positive help with a positive statement of appreciation. If things are not exactly right, it may be better to wait until a later time to express what you really hoped for. Both partners (patient and caretaker) need positive feedback and support. For the patient, their sense of self-esteem may be changing as a result of the losses and assaults caused by cancer and treatments. Receiving some loving feedback can feel good during these times; it helps to be acknowledged for the contributions they are able to make or that it is appreciated how hard they are working to tolerate treatment. For the partner who serves as caregiver, it can make such a difference to hear that you did something right, offered some support, provided some tangible assistance and that these efforts were appreciated. In the end, we are working on communication in another form. Try to think about providing a disproportionate number of positive comments over negative ones to give your partner. Some examples from the patient are:
- I really appreciate it when you stop at the store and pick up my prescriptions on your way home from work.
- I really appreciate it when you ask me how I feel.
- I really appreciate it when you take me to the doctor’s office.
- I am so glad to have you sit with me while watching a video.
- Thanks so much for getting me my water.
- I know you are under a lot of stress, but it would mean a lot to me if you could do …
Some examples from the caregiver are:
- You really are tolerating a lot from this chemotherapy. I want you to know that I really see its toll on you.
- You work so hard at trying to eat a good meal.
- I understand that you managed the kids all afternoon. That must have been really hard, thanks for doing that.
- I know how scared you are through all of this. I really appreciate all the energy that you invest in getting better.
- I know you are experiencing a lot of changes in your life right now. It is so great to see you smile at me. It reminds me of why I fell in love with you.
- I know you want everything done just as it was, but I would like to set some priorities with you because I cannot do everything that you and I used to do and there is no clone yet.
These are just examples of giving five positive statements of feedback before presenting something that could be read as critical. If you think of a minimum ratio of 5 positive to 1 negative, you may help to facilitate less resentment and foster a sense of appreciation.
Absence of Fun
Let’s face it, cancer is not fun! Having fun through the crisis of cancer can be tough but the absence of fun can undermine a couple’s relationship. Most couples came together because they enjoyed each other’s company and initially had fun together. It is essential that some recreation and joy be built into every relationship no matter how serious the problems. I know that sounds hard. In a previous issue I wrote an entire article on developing a “Fun Quotient” which can be found on our web site. I encourage you to read it for more explicit help in this area. In summary it says that fun needs to be planned and should be considered as important as medicine.
There are times when everyone needs a vacation from the intensity of cancer. You may need to redefine fun into smaller shorter moments. Sometimes a drive to the coast to watch a sunset with a great song on the radio can be enjoyable. Sometimes fun can be more dynamic such as a night out together. Fun takes creativity and both partners must take responsibility for creating moments, hours, days or weekends. It becomes a time to reconnect and to temporarily put a moratorium on cancer’s impact on your relationship. You should use your calendars to schedule fun just as scans and doctor’s appointments are put in ink. If you need help with kids, tell your support network that this is as important as chemotherapy and the doctor ordered it!
Cancer can chase away sexual intimacy. Cancer treatments and the consequences of treatment can have a serious impact on sexual activity and may forever alter the way in which a couple engages sexually. Who you were together as a sexual dyad before the cancer is a significant predictor of the post-cancer treatment experience. There are several key issues.
First, communication is a necessary and essential ingredient to adapt to change. Couples need to be able to talk openly about what they are feeling, needing and hoping to share. When you talk about an issue rather than ignoring it, an opportunity is provided to elevate its importance in the relationship. Both patient and partner need to be able to acknowledge their losses, feelings and changes. Communication becomes the vehicle for understanding what has changed and how to problem-solve the changes.
Second, sexual intimacy and sexual activities often have to be redefined. Many couples stop sexual contact because they can no longer engage in the same activities as before. It is important to recognize that sexual intimacy and the activities that constitute sexual contact can have many different definitions and is individualized for couples, regardless of cancer. After cancer the dyad may have to change the ways that they seek pleasure, offer touch, caress, or make physical contact. Erectile function may change and require medications, injections or implantation. Lubrication may be difficult and require alternative remedies. Traditional intercourse may no longer be an option as a result of bodily changes and sensations. All of these transitions are losses, but they do not require that you terminate sexual, affectionate or intimate contact. Being flexible in your ability to define and redefine sexual intimacy is essential in the preservation of this aspect of the relationship.
Sexual contact can be healing for couples. Finding ways to share pleasure, affection, physical closeness and meet each other’s needs can push cancer from the forefront to the background even on a temporary basis.
Here are a few potential resources to address the sexual needs of a couple:
- Get reading material to assist you on sexual activity. The American Cancer Society has a book on this topic, available in our library, but there are many books written about sex. Reading a book together can be the beginning of conversations on this topic.
- Talk to each other and share what each of you is thinking. Use the talk and listen exercise described above and make the topic “sexuality for me after cancer.”
- Begin slowly. Think about physical closeness, take turns touching each other and communicating about the touch. For example, have one partner lie still while the other partner gently touches the other partner in ways that are soothing and affectionate. For the person who is receiving the touch, communicate with the giver and let him/her know what feels good and what does not. Use this time to re-explore each other’s bodies and what feels good now. At the beginning limit the contact to 15-20 minutes or less and agree that there will be no sexual intercourse. Just as in the talk and listen exercise, try to remain nonjudgmental and put emphasis on understanding what the other person needs.
- Be committed to improving the sexual relationship by devoting time to this endeavor. Make sure the phone is shut off, the television is off and that you will not be disturbed. Think about having some romantic time together, whatever that might be for your relationship, in a non pressured way. Some people like candles, soft lighting, a night out, bubble bath or sexy music. Be creative, forward thinking and intentional about these activities.
- Develop new strategies for sexual contact and remember to allow room for things to be different. New strategies can involve trying different positions, incorporating oral sex, or touching each other in ways that bring satisfaction. Pillows can be used as supports to help reduce discomfort and pain. Approach every encounter with the desire to be supportive of each other and to move at a pace that feels comfortable. Talk to each other and be aware of how pain, sadness and change affect your ability to interact.
- Seek consultation from professionals. Talk to your physician or seek out a specialist in this area to help with any functional problems or worries. Talk to a psychotherapist who is knowledgeable about sexual functioning and cancer to help develop treatments. You may want to consider seeing a sex therapist.
Loss of Couple Time
Not having time together as a couple can have a deleterious effect on a relationship. Together time for couples often diminishes due to other life responsibilities even without the problem of illness. That is why it is imperative to allocate some “together time’ in your relationship that is not cancer time or any other time. This can be part of having fun. Many successful couples continue their courtship or re-start their courtship on an ongoing basis years after they engaged with each other. One technique that many people use is “date night.” Weekly each partner is responsible for planning a date on a rotating basis. Dates can be big or small and should accommodate the wellness of the person with cancer. Dates usually involve an invitation, planning, organization and then follow-through on the event. There are no set rules, and can become an opportunity for you to be creative. I have listed some suggestions, but you will be able to generate better ones together:
- A dinner at a new restaurant.
- Movie night in the theater.
- Movie night at home with popcorn, dim lights and a soft blanket under which to cuddle.
- A special dinner at home prepared by your favorite take-out place, served on your china with candlelight and music.
- A walk on the beach with a picnic lunch.
- A picnic in the back yard on a blanket with a book of poetry.
- Comedy night at home with a video of a comedy routine.
- Couples’ massage. Take turns giving to each other or hire someone to come to the home and provide these.
Believing the Cancer Experience is Over – Too Soon
More often than not the cancer experience may feel over for the well partner when treatment ends. For the patient, however, this may be the beginning of dealing with the psychological impact of the disease and all the ways that it has changed how they think about their lives, their bodies, and the future. For some patients it can be very upsetting when their partner acts like cancer is in the past when it certainly does not feel that way to them. The aftermath of cancer goes on for a substantial period of time for patients. It is not unusual for individuals to process this experience for the rest of their lives.
Fears of recurrence can be significant and may be an ongoing emotional stress. It is important to acknowledge your differences in perception and to talk about how cancer has changed each of you. It is important to make time to discuss these ideas. Some couples seek counseling to explore this, while others manage by communicating with each other. Sometimes patients join support groups because they provide a forum in which they can continue to process the experience yet allow the partner to spend less time focused on cancer. A couple’s group or workshop may also be a good resource to help process feelings and learn better coping strategies. It is important for the well partner to simply understand that their partner will have an ongoing need to process the experience. Being emotionally available to talk about these concerns will be a significant support in the relationship.
Healing Old Wounds
Every couple has issues that pre-existed the cancer. It is common for these pre-existing problems to surface during the stress of the cancer experience. Anticipating this may help you negotiate your way through these. Sometimes cancer is an opportunity to solve some of these problems. Once your initial treatment and recovery is in process the cancer can provide an opportunity to bring forgiveness to the table or to redesign your relationship in a different way. Couples may or may not be able to do this on their own; it can be very helpful to seek assistance from a couple’s therapist. If this is not possible, take time after the initial trauma of the cancer has resolved to begin to talk about these issues. Be patient during the traumatic times. Try to look for the good in each other and to focus on what brought you together. Cancer is an eye opener with regard to priorities. It may provide an opportunity for each of you to let go of past grievances.
Holding onto anger and being resentful is a very energy intensive experience. That energy could be used in other more important ways. It may be helpful to learn to manage anger and resentment by learning relaxation and meditation. Finding an individual therapist can also help to work through some pre-existing difficulties.
Coping with cancer is a mighty task. It is very important to support each other’s efforts to cope effectively. You can work on preserving your relationship by participating in intervention programs and seeking information. There are many different types of interventions offered here at UCLA and in the community. You may want to consider participating in our groups and workshops:
- Mind/Body Approaches to Coping with Cancer Workshop
- Couples Together Group
- Couple’s Workshop
- Family and Friends Group
- Meditation Group
- Individual and/or Couples Therapy
This is a beginning review of what to do that I hope will stimulate thoughts, feelings and most importantly, communication for you. Cancer is a couple’s disease and requires commitment on the part of patients and partners. You need to work together. Remember to have patience with yourself and with each other. Please let us know how we may assist you.
Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology
© Anne Coscarelli, Ph.D. All rights reserved. 2005.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.