Dr. Campbell directs the nonprofit CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org) and online self-help discussion group courses offering an exchange of practical advice such as the following.
Guilt is a common reaction to chronic fatigue syndrome and fibromyalgia. Some people blame themselves for getting CFS or FM, thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren't the spouse or parent they wanted to be.
If you experience guilt associated with CFS or FM, what can you do to ease the burden it imposes? Here are seven strategies used by people in our program.
1. Adjust Your Expectations
Guilt is often triggered by perfectionism, holding ourselves to standards that don't fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like "I have to do things perfectly" or "I have to be the best at everything" or "My kids deserve everything from me that other children get."
You can reduce guilt by adjusting your expectations so that they match your new level of functioning.
How do you do that? One place to start is by doing a reality check on your expectations.
• On the left side of a piece of paper, list all those things you no longer do but think you should do; for example, fix elaborate meals, drive kids to their activities or earn a living.
• On the right side, write your judgment of whether the expectation is realistic.
2. Reframe (Change Self-Talk)
Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt.
One person in our program says that she used to chastise herself for taking a nap. Her self talk was "You are weak and lazy for having to rest." Now, when she goes to take a nap she tells herself, "I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren."
You can change your habitual ways of thinking about yourself to make them more accurate and more friendly.
For step-by-step directions: See the article “Taming Stressful Thoughts – Making Thoughts Work for You.”
3. When Feeling Guilty, Shift Your Attention
Even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise.
One person in our program said that when she feels guilty, she asks herself, "Is this feeling productive?" In some cases, the answer will be "Yes." Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)
If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, "It's better not to go some places in your head, so I've learned how to control my own thoughts." Another said that when she is caught up in feelings of guilt, she tells herself things like “This isn't my fault” or “These feelings will pass as long as I don't allow myself to act on them."
4. If You're Wrong, Apologize and Make Amends
Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care.
One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes.
If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, "I was so embarrassed by canceling out on people that I promised myself I would do better. That commitment motivated me to be more consistent in pacing and to become a more dependable person."
5. Educate Others (Within Limits)
In addition to adjusting your expectations for yourself, others’ expectations of you will have to change as well. People in our groups have suggested several strategies for doing this.
One is to educate people about CFS and FM, emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her/him. One person in our program gave each member of her family a booklet on CFS from the CFIDS Association and asked them to read it as their birthday present to her one year.
The process of educating family and friends is usually a gradual one, often taking several years.
6. Learn Assertiveness
Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won't do.
A person in our program says that her family now accepts it when she says "I am sorry, I can't do that." She tells about a family outing she and her husband went on with their adult children. At the end, her husband invited the children over to their house.
• "In the past," the woman says, "I would have gone along with it, seething inside at myself for not saying anything and at them for not knowing I couldn't do it."
• Instead, she told everyone that she needed to rest and she suggested that her husband spend the evening at one of the children's homes. So that's what the family did. The woman took a nap at home while the rest of the family went to a daughter's house to watch a movie.
7. Practice Relationship Triage
A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go.
• You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship.’
• For relationships you decide are necessary, you might limit the frequency of contact.
Note: For much more on this and related subjects dealing with the emotional dimensions of ME/CFS and fibromyalgia, click HERE.
This article is reproduced with kind permission from Bruce Campbell’s popular CFIDS & Fibromyalgia Self-Help website (www.cfidsselfhelp.org), which offers many free articles for people with fibromyalgia and ME/CFS; low-cost online self help courses in moderated discussion group format; and free follow-up programs & support.
* Dr. Campbell is an ME/CFS patient who slowly achieved improved health more than a decade ago by researching and practicing an ongoing regimen of significant lifestyle changes (see “Recovery from Chronic Fatigue Syndrome: One Person’s Story.”)