What Is Chronic Fatigue Syndrome?
When Your Loved One Has Chronic Fatigue
It's the rare person who doesn't need help coping with the stress, fatigue, and frustrations that chronic fatigue syndrome can bring. As a caregiver, you'll need to learn all you can about chronic fatigue support.
By Beth W. Orenstein
Medically Reviewed by Pat F. Bass III, MD, MPH
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Mark Niederle of Annandale, N.J., was devastated in 1990 when his wife Jackie was diagnosed with chronic fatigue syndrome (CFS). “I felt a range of emotions, but mostly fear, hurt, and helplessness — fear because of the unknown, and hurt and helplessness because it broke my heart to watch my wife struggle with the impact of this debilitating illness and there was nothing I could do to stop it.”
In the nearly 20 years since Jackie’s CFS diagnosis, the Niederles have found ways to cope, and Mark, 49, has learned how to best provide chronic fatigue support for Jackie, 45. He has become her “eyes and ears,” he says, “helping her plan her day.”
On good days, Mark says, Jackie thinks she can “take on way too much and make up for lost time. She doesn’t see the relapse coming. That’s where I come in, discussing what is most important for her to do and what can wait for another day. Jackie really appreciates when I do this for her because she says she wouldn’t have realized it until it was too late.”
Understanding the Limitations of Chronic Fatigue Syndrome
As the Niederles discovered, when a family member or loved one is diagnosed with chronic fatigue syndrome, it can be difficult on everyone. People with chronic fatigue syndrome are often limited in what they’re able to do physically, and that can put a strain on relationships, says Morris Papernik, MD, internist with ProHealth Physicians in Glastonbury, Conn., and a member of the federal Chronic Fatigue Syndrome Advisory Committee to the U.S. Department of Health and Human Services. It’s hard for patients with chronic fatigue syndrome to plan because they don’t know how they will feel day to day. That too puts strain on family relationships, Dr. Papernik explains.
How to Help Someone With Chronic Fatigue
Here are ways to help your loved one with chronic fatigue symptoms and provide chronic fatigue support:
- Learn all you can about the condition.“Education is a big deal,” Papernik says. Finding out about the disease will let you know what to expect and help you understand why your loved one has the chronic fatigue symptoms she does. This will help alleviate some of the stresses associated with chronic fatigue syndrome.
Be supportive and open.Discuss your feelings with one another. Make sure the patient understands you recognize that she has a serious illness. Some people think that chronic fatigue syndrome is “all in the head,” and that attitude can devastate those who experience stress and fatigue, among other symptoms. If something is bothering you or the patient, discuss it. That way it won’t fester and become an issue between you,Papernik says.
A good way to show your support is to go with your loved one to doctor’s appointments and listen to what the doctor says. Also, be specific when you volunteer to help. Don’t just say, “What can I do?” Offer to go to the grocery or run errands or write checks and pay bills. Mark Niederle adds, “It’s important to let Jackie know that it is all right if she can’t get everything done like she used to. It helps her emotionally and not to feel guilty for this or that — and that helps make her limitations a little easier to take.”
- See to your own needs.“You should have your own outlets,” Papernik says. “If you become ill because you’re doing everything — taking care of yourself and the person who is ill as well as other family members — you might become run down yourself and then you won’t be of help to anyone.”
- Be flexible.Patients will have good days and bad days, and you never know in advance which it will be. “We keep plans tentative whenever possible, and we try to always have a back-up plan just in case,” Mark Niederle says. “We know the importance of making time for one another as well as making time for just ourselves.”
- Look for less strenuous activities to do together.Modify activities if necessary to accommodate the person who has chronic fatigue symptoms. Watch movies or television. Read aloud to one another. Play word games. Listen to music. “We enjoy activities where Jackie’s involvement is not too physical,” Mark Niederle says, “like riding a motorcycle with her as the passenger.”
- Get outside support.Joining a support group “is one of the best things you can do when you are having a hard time coping,” Mark Niederle says. More than 4 million people in the United States have chronic fatigue syndrome. It helps to know your situation is not unique and it offers reassurance to hear stories similar to yours, Niederle adds. A good place to start is the Web site of the .
When someone you love is diagnosed with chronic fatigue syndrome, you will need to make adjustments to both of your lives. Communicating openly with each other will make it easier to adapt to the patient’s limited and ever-changing capabilities.
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