Key 8: Seek Support & Understanding

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By Bruce Campbell

(Note: From the series Ten Keys to Successful Coping: 2005.)

Chronic illness creates stresses for most relationships. Relations with family, friends, coworkers and bosses, and even doctors are altered in ways which suggest that the area of relationships is another in which the limits imposed by illness can create new challenges both for us as patients and for those around us.

As patients, we deal with the frustration of having invisible illnesses that are often not accepted or understood. We may have trouble convincing others that we have a serious illness. We often hear "but you look so well," and sometimes comments like "just pull yourself together and snap out of it." We may be on the receiving end of well-meaning but unsolicited advice.

Our limits create problems for others. Because we have less energy, we may not be able to do as much as before. Both we and other members of the family may have difficulty adjusting expectations to fit our new limits. Others may have to assume new responsibilities, which sometimes generates resentment. We may feel guilty about not doing our share. Our limits make us uncomfortably dependent on others.

Our limits and the unpredictability of symptoms can make it difficult to maintain existing relationships outside the family or to create new relationships. Being ill makes it harder to get together with people. We may be unable to socialize in ways we used to. We may find it difficult to honor commitments, sometimes having to cancel at the last minute.

Here are six strategies you might consider using in response to these frustrations.

Assess Your Relationships

People with ME/CFS and fibromyalgia often find themselves re-assessing their relationships. In our program, we refer to this conscious and deliberate approach as relationship triage: making explicit decisions about who to include in your support network, concentrating on the more valuable or necessary relations and letting others go.

This re-assessment is motivated by two aspects of chronic illness. First, illness imposes limits which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative.

The cost of spending time with such people may be great enough to convince you that some relationships are not worth maintaining. You may decide to keep others and rate still others as essential. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.

Here's how one class member described her use of relationship triage:

I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.

Nurture Important Relationships

Work hard to nurture those relationships that are most important to you, especially that with your spouse or partner. Research suggests that relationships are more stable if there is an emphasis on the positive, so look for the good in one another and in the relationship.

A study that charted the amount of time couples spent fighting versus interacting positively (touching, smiling, paying compliments, laughing, etc.) found that relations were stable and satisfying if the ratio of positive interaction to negative was five to one.

Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. Here are some suggestions for achieving good communication.

Pick a good time. Select a time for important conversations when both you and your partner will be at your best. Find a time when you will not be distracted by pain or brain fog, and when your partner can give you good attention.
Be grateful and respectful. Treat your partner with respect, acknowledging their support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in family problems.
Practice problem solving. Focus on the difficulties caused by the illness, rather than personalizing problems. Think of "gripes and solutions": describe complaints, then discuss possible solutions. Work on only one or two problems at a time.
Test your understanding. From time to time, check whether you have understood the other person's position by restating it in your own words.

Acknowledge Your Part

Serious illness changes the lives of all who are touched by it. It alters dramatically the financial circumstances of most families, forces radical changes in how household tasks are divided up, and drastically reduces the number and scope of activities the family can do together.

Just like patients, family members too can feel isolated and helpless. They may experience loss because their dreams are put on hold. They, too, may feel abandoned or feel frustrated at the restrictions on their lives. The unpredictably of symptoms and mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion.

Here are some tips for making your relationships run more smoothly. Acknowledge that your illness creates problems for others. Express your appreciation for their efforts. Acknowledge that the illness can make you unreliable. Out of respect for other people, warn them that you might have to cancel on short notice. To help maintain the relationship, tell them that you value them and that backing out does not mean you don't like them.

Set Limits

Learn to set limits with yourself and then with others. Make clear to yourself and to others the consequences of your trying to meet old expectations: intensification of symptoms and postponed improvement.

Be as specific as possible in asking for help if others offer assistance. For example, you might ask if they would do grocery shopping, make a phone call, or drive you to a medical appointment.

Here's how one member of our program described how she sets limits:

When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today' or ‘I am not up to doing that at this time' and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.

Build a Support Network

In thinking about how to meet your practical and emotional needs, consider putting together a network of people who can help. Author Devin Starlanyl suggests that such a network contain at least five people. Some may offer practical help, such as grocery shopping, housecleaning or driving.

Others may be companions for outings such as a visit to the coffee shop or a night at the movies. Still others may offer emotional support by listening and offering reassurance. In any case, it's wise to have several people to fill these various needs, so that one person does not feel overburdened and burn-out.

Support groups and self-help classes can provide support of several kinds. Being with fellow patients counteracts isolation and offers an experience of being understood and comforted. Groups can provide information about new treatment options and local doctors.

Groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from illness. And they can offer models of successful coping with illness, thus dispelling fear. But not all groups are helpful. Some are negative in tone, reinforcing a sense of victimhood.

Some, often the same groups, are dominated by one or a few people. Seek those that provide how to respond positively to illness and those that insure participation from all members who wish to participate. (For on online directory of fibromyalgia groups, see the Arthritis Foundation website: www.arthritis.org .)

Consider professional help. A sympathetic therapist can provide caring, offer an outsider's view and provide continuity. You might look for one who specializes in working with people who have chronic illness. Therapy can also be helpful for couples, a place in which the strains created by living with long-term illness can be explored.

Educate Others (Selectively)

Some patients have reported success in educating others about their illness, but most put limits on their efforts. If you think educating others would help them to be more understanding and supportive, you might talk with them or give them something to read, such as the articles in our Family & Friends archive..

People in our program who have tried educating the people in their lives report that this approach often requires patience and is not always successful. They have experienced positive responses at times but have also concluded that some people may never understand the illness or be sympathetic.

In Summary

Chronic illness creates severe stress in many relationships. Strategies such as those discussed here may help you reduce your frustration.