Managing Chronic Fatigue Syndrome and Fibromyalgia
22. Couples Issues
CFS and fibromyalgia put couples under stress. This chapter offers strategies for addressing three problems faced by couples: sexual difficulties, strained communication and caregiver burnout.
When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple's sex life, but, like other aspects of long-term illness, intimacy problems can be addressed as well.
When we asked people in our program to describe the effects of their illness on their sexuality, all those who responded said that illness had reduced their sexual activity. Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications. Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.
Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways. Here are six of the most common adaptations.
1. Talking. Several people reported that their relationship with their partner improved after they talked openly about their reduced interest in sex. As one said, "I explained that I still loved him and felt the same (or more strongly) about him, but I just couldn't show that through initiating sex...I have no desire for self-pleasure either. Explaining that sure made a difference to his acceptance of my state!" Others reported that they benefited from open communication in bed. One said, "I let him know if a certain position hurts and we change positions."
2. Alternative Activities. Another very common theme was adapting to illness by focusing on alternatives to conventional sex. One person wrote, "The times I am not up to having intercourse, he knows I am usually up for some cuddling and happy to satisfy him another way." Others wrote of alternatives to intercourse, for those who think that appropriate. "You don't have to have intercourse to be sexually connected...You can be satisfied by manual stimulation and also oral sex."
Others have found other ways to express their affection: through hugging, kissing, and holding hands, through words of appreciation and thoughtful acts, and through shared activities like going out for dinner together, watching a favorite TV program or giving one another a massage. One said, "We still hug, kiss and say ‘I love you' lots. I feel we have a very strong and healthy relationship."
3. Planning. A third common adaptation is planning for sex. Several people mentioned taking extra rest or reducing their activity level on days they anticipated having sex. Also, a number said they and their partners plan "dates." One said, "What my husband and I have learned is that we need to schedule a ‘date'. I actually put it on my calendar." Another said, "The ‘date' planning has worked for me because I tend to do less of the things that I know will cause me residual pain."
Others mentioned being mindful of time of day. Pain and other symptoms may be lower during certain hours of the day. By timing intimacy for those times, couples minimize discomfort and increase enjoyment.
Another couple reported increasing the frequency of sex through making a commitment to having sex once a week. The wife reported that more frequent encounters made sex less painful and her husband "is much more cheerful and doing more around the house."
4. Flexibility and Experimentation. Given the often unpredictable course of CFS and FM, it can help to be flexible about when sex occurs and what positions and activities are involved. One person said, "We've experimented with timing (morning is best), position (I seem to do best on my side) and lubricants." Others use observation as a basis for experimentation. One person wrote, "I noticed that in the summer I had more desire and realized it had to do with the heat, so we started to shower together."
5. Addressing Pain and Hormone Problems. Some people said that their sex lives improved after treatment of pain and hormone problems. They reported treating pain by the use of pain pills, topical ointments, massage and heat, and by adapting how intimacy occurs.
There are several factors involved in the use of medication. One solution is for the person who is ill to time the taking of pain medication so that it will be at peak effectiveness when sex is planned to occur. The type of pain medication is also important. The person with pain may want to avoid narcotic pain medications and tranquilizers, which dull the senses as well as reducing pain. Other means of pain reduction include taking a bath before sex, stretching and massage.
Pain can be reduced by using positions that are comfortable, by changing positions periodically during intimacy and by alternating activity and rest. Another pain control approach is the combination of distraction and meditation. Distraction means reducing pain by placing attention elsewhere, focusing on sensations, both those given and those received. Also, concentrating on mental images of making love keeps the mind focused on pleasure, distracting attention from pain.
Several people in our groups also commented on how their interest in sex had improved with hormone treatment, either estrogen, testosterone or both. One said that testing showed that both her estrogen and testosterone levels were low. Treatment of the latter "not only helped libido, but my energy level as well." Hormone problems can also affect men.
6. Emphasis on Caring. A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring. One wrote, "Sex is important in a relationship, but I don't feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage."
Another said, "My husband and I have found we don't NEED to express our affection sexually...For us, sex does not compare to the kind of fulfillment which is a beautiful thing when shared between two people who are filled with warm, tender, loving feelings toward each other." She wrote of expressing affection through sharing time together, touching, caressing, and cuddling.
CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness.
The stresses brought by serious illness can make good communication difficult. To complidate matters, CFS and FM create the additional challenge of cognitive problems. Here are seven ideas for how to improve communication if you or your partner have CFS or FM.
1. Pick a Good Time and Setting. If you have something important to discuss with a significant person in your life, select a time when both of you will be at your best. It should be a time when both of you can give good attention and you will not be distracted by pain or brain fog, preferably during your best hours of the day. Choose a place that minimizes distractions and interruptions.
2. Practice Good Listening Skills. Good communication is based on each person understanding the other person's views. Understanding begins with listening, which means focusing your attention on what is being said, with the goal of understanding the speaker's point of view.
Listening works best if it occurs without interruption. After the person is finished speaking, respond by acknowledging having heard them. You might say something as simple as, "I understand." If you are not clear, you can respond by asking for clarification or more information. You might say something like, "I'm not sure I understand. Can you say something more?"
From time to time, check whether you have understood the other person's position by restating it in your own words. You could say, "Let me try to summarize what I've heard and you can tell me if I'm understanding you."
3. Focus on One Thing at a Time and Be Specific. Focus on one issue at a time. If you are requesting that the other person change, be specific in your request. Avoid making general requests such as, "I need help with the housework." The person being asked may wonder what would be involved in responding to the request. Instead, say something like, "Can you do a load of laundry today?" or "Can you do the grocery shopping?"
If you are the one being asked to do something, it's reasonable to defer giving a yes or no answer until you are confident you understand what is expected of you. You can ask, "What specifically would you like me to do?" Even if you decide to decline, you can still acknowledge the importance of the request to the person asking for help.
4. Aim for Solutions. Have as your goal finding solutions, not blaming one another or finding fault. The idea is to be able to discuss problems in a constructive rather than a confrontational way. Treat each other with respect, acknowledging his or her support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in shared problems and express appreciation for the other's efforts.
5. Use Problem Solving. Use problem solving to find solutions. Begin by brainstorming, which means thinking of a variety of possible ways to solve a problem. In brainstorming, the goal is to generate as many ideas as possible, without evaluating them. For example, if your problem is how to do household chores when one member of the family is ill, alternatives might include dividing up the chores differently among members of the family, hiring occasional or regular assistance, simplifying tasks (for example, having simpler meals or cleaning less frequently), and moving to a smaller home that is easier to maintain.
Second, you evaluate each proposed solution, decide which ones are most promising and try one or two of them. Third, after giving each solution a fair try, evaluate the results. Some potential remedies may not work, so you may need to have further discussions and try other solutions. The final solution may be a combination of several approaches. If several strategies are unsuccessful, you may decide that a problem may not be solvable or not solvable at the present time.
6. Consider Getting Help. In many cases, you will be able to solve your problems yourself, but at times you may want to get help, either in understanding the causes of your problem or in finding solutions. So it may help to ask what resources are available to you. For example, to get a fresh perspective on your situation, you might ask other families how they have solved a similar problem or you might ask what community resources (church and public groups) are available.
Also, if conversations about your problems are not productive, you can consider getting professional help. A counselor can facilitate a solution to particular problems and also help you practice good problem solving skills.
7. Have Regular Relationship Discussions. Finally, here's a technique that one couple in our program uses to nurture their relationship and to solve problems in their lives: having regular discussions of their relationship. They set aside Sunday evenings as a time to discuss any issue that is on their minds, calling it their "talk night."
Having regular discussions means that both husband and wife know that they have a forum in which to state problems and frustrations, and a means for finding solutions. Also, because the talks are frequent, they can refine their communication skills through regular practice.
The husband explains that "Anything either of us sees as a problem or causing stress is a likely topic. Even very minor things are OK." Topics include an issue one has with the other, problems with friends or children or problems around the house. "A rule is the we each openly listen to the other without being defensive. We problem-solve together to come up with a resolution for each issue. After doing talk night we start each week refreshed and with the feeling that comes from having dealt with whatever problems were there."
Tips for the Caregiver
Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties. Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are nine to consider.
1. Maintain Your Health. This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well and to exercise.
2. Accept Help. When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning and transportation.
3. Take Time for Yourself. Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.
4. Educate Yourself. Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on our website. See the article "Educate Yourself" for a list of patient organizations, other websites and books about the two conditions.
5. Stay Connected. Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children or any other kind of socializing that keeps you connected with others.
6. Consider Counseling. Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts. Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
7. Grieve Your Losses. Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution. And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future. Like the person in your life with CFS and FM, you, too, need to grieve your losses. For ideas on how to work through loss, see the discussion of finding a "new normal" in the previous chapter and also Chapter 26.
8. Create New Shared Activities. Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together. One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife's new limits, they shifted from camping and hiking to dinner and a movie.
The point is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don't come to see their relationships as just about illness and deprivation.
9. Seek Support from Other Caregivers. Fellow caregivers can offer strength, support, inspiration and models of successful adaptation. You might meet such people through patient support groups.