Chronic Fatigue Syndrome and fibromyalgia create great strains in relationships, both intensifying existing sources of stress and creating new ones. The drastic changes brought by illness, together with the patient’s having less energy, put family and other relationships under great strain. In this chapter, we describe relationship problems created by long-term illness and offer ways to cope with them.

Adjusting Expectations to a “New Normal”

Both CFS and fibromyalgia impose significant limits. People with either condition typically function at 50% or less of their previous level, frequently much less. Trying to do more than their bodies allow leads to more intense symptoms and sometimes to even more restrictive limits. To the extent that all those around the patient can accept the limits imposed by illness, they can create a plan for a new type of life. This life requires both practical and psychological adjustments.

Practical adjustments include redistribution of household tasks, often increasing the load on the well spouse. Because they have significantly less energy than before they were ill, people with CFS and fibromyalgia have less time for relationships than they had when healthy, creating a loss of companionship. Also, aspects of the illness, such as the unpredictability of symptoms, energy limits and sensory overload, suggest the need for adjustments.

Energy limitations may force a reduction in the length or the type of shared activities. One husband mentioned adjusting to his wife’s physical limitations by replacing hiking and camping with dinner and a movie. Sensitivity to light and noise may lead to changes in where and how people spend their time together. For example, a family may rent movies to view at home, rather than going to a movie theater. In sum, the patient’s illness may reduce the time he or she can spend with other people and lead them to focus on less physically and mentally demanding activities.

Like the patient in your life, you have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have lost some part of the companionship you once had and, instead, may have taken on new responsibilities. 

Your ability to understand and accept the limits brought to the patient in your life will have effects for both you and for the patient. A person in our program told us that the turning point in her recovery was her husband’s acceptance of her limits. For a period of time before that, he expressed frustration at her inability to do as much as before she was ill. When he accepted that she was a different person with CFS, she was able to release her guilt about not doing as much as before, accept her limitations and begin to improve.

Improving Communication

Serious illness puts families under great stress. Good communication can be one of the casualties. You'll find below some tips on how to improve communication with the person in your life who has CFS or fibromyalgia.

Scheduled Relationship Discussions

A strategy for nurturing relationships and keeping discussion of issues in a problem solving context is to set aside time regularly to discuss the relationship you have with the person in your life who is ill. One couple in our program calls it their “talk night.” They set aside Sunday evenings as a time to discuss any issue that is on their minds. 

The husband explains, “It can be an issue one of us has with the other, problems with friends or children, problems around the house, my work, etc. Anything either of us sees as a problem or causing stress is a likely topic. Even very minor things are ok. A rule is the we each openly listen to the other without being defensive, and we each really try to put ourselves in the other's place and feel what it's like for them. 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. Talk night has worked exceptionally well for us.”

Setting and Approach

For "talk night" type conversations or other important conversations, we suggest you pick a time when both you and the person with CFS or FM will be at your best. Find a time when you can give good attention and the person who is ill will not be distracted by pain or brain fog, preferably during his or her best hours of the day.

To create an atmosphere of cooperation, consider having each person acknowledge their part in shared problems and express appreciation for the other’s efforts. Also, consider having each person ask, “What can I do to make your life easier?” and each person state, “Here are some things you can do to make my life easier.” For more, see the discussion of asking for help, below.

Listening

The "talk night" example mentioned the importance of good listening to successful communication. As suggested by the quotation, listening means focusing your attention on what is being said. Listening does not mean agreeing, disagreeing, defending yourself or criticizing the other person. It’s goal is to understand the speaker’s point of view. Listening works best if it occurs without interruption.

A common listening technique is to acknowledge the other person's points after they have finished speaking. A good way to do that is to state what the other person has said 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.”  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?”

Problem Solving

As described in the "talk night" quotation, once you believe you understand one another’s position, you can move on to searching for solutions or problem solving. The first step of problem solving is brainstorming: thinking of a variety of possible ways to solve the problem and then trying one or more of them. Sometimes problems have multiple causes, so a combination of solutions may be appropriate. 

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.

After brainstorming possible solutions, try one or more of them and evaluate the results. Some potential remedies may not work, so you may need to have further discussions, but others may prove helpful. A solution may be a combination of several approaches. If several strategies are unsuccessful, you may decide that a problem may not be solvable at the present time.

Asking for Help

It can be difficult and awkward to be on either the asking or the receiving end of requests for help. Those needing help are often reluctant to ask and may word their request in a general way, such as, “I need help with the housework.” The person being asked may wonder what would be involved in responding to the request. A solution is to be specific. The person asking can say something like, “Can you do a load of laundry today?”

If you are the one being asked, 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.

Intimacy and Sex

Because of pain, reduced energy or reduced interest, CFS and fibromyalgia often affect a couple’s intimacy, creating another challenge for couples. Here are some common problems and strategies for handling them.

Fear 

The experience of pain leads to avoidance, out of fear that pain will return or worsen. When the activity being avoided is sex, couples lose an important source of pleasure and intimacy, and may experience feelings like guilt, fear and resentment. People in pain may feel guilty about denying pleasure to their partner. The partner may feel fearful, worried that he or she may do something to intensify pain, resentful at loss of intimacy, and guilty for feeling resentful. The solution is communication and problem solving.

For communication tips, see the previous section.  As with problem solving generally, it is usually helpful to consider a variety of possible solutions to problems of intimacy and to experiment to find those that work in your individual circumstances. Often, some attempts are unsuccessful, but a combination of other strategies prove helpful.

Pain

Some people find that pain interferes with their enjoyment of sex. Anticipation of pain can lead to avoidance of intimacy, which may create guilt for the spouse who is ill and resentment in the well spouse.

A number of strategies may help. If pain in intercourse is a major concern, you and your partner might focus on touching and cuddling. By focusing on giving mutual pleasure while in comfortable positions, you can make your intimate time together last longer and be very satisfying. Pain may be minimized if you concentrate on foreplay and sensuality rather than intercourse.

Another factor to consider is medication. One solution is for the person with CFS or FM to time the taking of pain medication so that it will be at peak effectiveness when you plan to have sex. 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.

Time of day is another consideration. If pain and other symptoms are lower during certain hours, there may be more pleasure and enjoyment if sex occurs at that time.

Pain can be reduced by using positions that are comfortable, by changing positions and by alternating activity and rest. Comfortable positions will differ from couple to couple and are best found through experimentation. Changing positions periodically during sexual activity can also help control pain, especially for fibromyalgia patients, who are susceptible to greater pain when they stay in one position too long. Periodic rests may be especially useful for CFS patients, for whom exercise is more successful if periods of activity are alternated with times of rest.

A final pain control approach is the combination of distraction and meditation. The common method of reducing pain by placing attention elsewhere can be applied in sex, by focusing on sensations, both those given and those received. Also, concentrating on mental images of making love keeps the mind focused on pleasure, not on pain.

Lack of interest

Reduced interest in intimacy, often called low libido, can have a number of causes. One is fear of pain or an increase in other symptoms. For ideas on dealing with pain, see the section on pain. Low libido is sometimes a side effect of medications. A change of medications or a lower dosage may help.

Travel

Travel, a source of enjoyment and pleasure for many people, can be difficult when someone has Chronic Fatigue Syndrome or fibromyalgia. For most people with the conditions, however, enjoyable travel is possible if some adjustments are made.

One foundation for successful travel is realistic expectations. Because the two illnesses impose limits and because travel requires more energy than everyday life, people are able to do less now when traveling than when they were healthy and less on the road than they can do at home. 

Adjustments to illness may include taking extra rest in the days before a trip starts, taking rests during road trips (for example, a 15 minute rest every two hours), setting limits on how many hours a day to be active, taking a full day of rest after a long drive or plane flight, keeping a flexible schedule to accommodate unforeseen events or higher than expected symptoms, and alternating an active day with day of rest.

People with CFS and FM have told us that they have traveled more successfully after they began planning their trips in great detail. They mentioned using books and the Internet to decide what they wanted to see, then to set their itinerary based on how much activity they could do. Planning also involved packing ahead of time and, for some people, making arrangements to use wheelchairs or motorized carts in airports. One person said that having a detailed itinerary set in advance helped him resist the temptation to do too much when away from home.

People also report having more enjoyable trips when they talk to their travel companions ahead of time about their limits and make a joint plan. The person with CFS or fibromyalgia may need extra rest, so there may be some activities he or she won’t be able to do. The patient may join in some activities but forego others.

Taking extra rest before, during and after a trip is a common travel strategy used by people with CFS and FM. They store up energy by taking extra rest before a trip, limit symptoms during a trip by taking extra rest while away, and take whatever extra rest is needed after to get back to normal.

Taking Care of Yourself

Living with someone who has CFS or FM is a stressful experience. Here are eight strategies you can use to take care of yourself, responses to the pressures created by the presence of serious illness in your family.

Maintain Your Health

Take time to get adequate rest, to eat well and to exercise.

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.

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. The point is to give yourself an opportunity for leisure and enjoyment.

Stay Connected

Avoid isolation by maintaining relationships with extended family and friends.

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 family member who is ill.

Educate Yourself

Having information about CFS or FM is empowering. For a list of sources of information about the two conditions, see the article Educate Yourself.

Grieve Your Losses and Then Plan a New Future

Serious illness brings many losses, which need to be grieved. For ideas on how to work through loss, see the section on loss in the next chapter and the chapter on moving beyond loss in the textbook for the patient course.

Building a new life includes creating new activities to do with your family member who is ill. The new activities replace ones lost because of illness and counteract the temptation to dwell on illness and loss. One couple in which the wife is housebound have taken on the study of music together. Because illness can be all-consuming, it may take some deliberate efforts to break through. The point is to create occasions for shared pleasure, so that both ill and healthy members of the family don’t come to see their relationships as just about illness and deprivation.

Seek Support from Other Caregivers

Fellow caregivers can offer strength, support, inspiration and models of successful adaptation.

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