Coping Emotionally
Coping strategies are critical for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as they usually feel as if their lives have been turned upside down. If you have CFS/ME, you may have lost your ability to work, participate in physical activities and socialize, as you did in the past. You may encounter disbelief from health professionals, and possibly family and friends, who suggest that you are not really sick because you “look fine." Some people with CFS/ME start to believe this and berate themselves for "not doing enough," which can lead to over-activity and "crashing." Developing coping skills and getting emotional support are, therefore, a crucial part of healing.
A survey of people with CFS/ME in the US found that the most helpful skill for coping with the illness was "attitudinal adjustment." The study participants also noted the importance of rest, pacing themselves, limiting their activities, minimizing their stress, reprioritizing their goals, educating themselves, and improving their diet and nutrition.
“Attitudinal adjustment” boils down to accepting the illness and taking care of yourself. Study participants made the following comments:
—I stopped comparing myself to others.
—I don't waste time thinking about what life was like before I was sick.
—I remind myself to be in the moment – that's all there is.
—I look back and compare myself to what I was like when I was first sick and appreciate the progress I have made so far.
A long-time survivor of CFS/ME and advocate said:
—The most important point that I want to make is that you are not your illness. You are still that funny, creative individual who just happens to have a chronic illness.
Emotional and Spiritual Support
Anyone experiencing a chronic illness needs time to grieve the loss of their former life.
Some people find that engaging in activities that cultivate their spiritual growth, such as prayer, yoga, religious services or meditation, is helpful.
Social Support
Isolation can be one of the most difficult aspects of having CFS/ME. Family and friends may not understand your lack of energy and what you are going through. This may be compounded by physicians and other health-care workers who refuse to see your illness as "real."
The first step in helping others to understand your condition is to educate yourself, and then others. It can be helpful to connect with others who have the illness, for example, through a support group. Belonging to a group or community of people who understand and care can provide you with emotional support and useful information. Network with others who can support you, through brief telephone calls or emails. You can also join Le Club and receive support from other women in our moderated online discussion groups.
Depression and Anxiety
Some people with CFS/ME feel depressed as a result of their illness, the many lifestyle changes and restrictions that they have had to cope with, such as being unable to participate in the activities they once enjoyed, as well as possible job, financial and relationship problems. If you have CFS/ME and think that you may be depressed, discuss this with your doctor. He or she may be able to refer you to a counsellor or support group.
Many people with CFS/ME experience anxiety. Relaxation techniques, pacing yourself and developing an attitude that can accommodate your situation will help. However, some individuals require medication to alleviate their anxiety or panic attacks.
Stress management tools may also help you deal with the depression and anxiety that can accompany chronic illness.
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