Chronic fatigue syndrome (CFS) and fibromyalgia (FMS) are debilitating and misunderstood chronic illnesses that can strike people of both sexes and all age groups. Partners, friends, and relatives of people with CFS or FMS may feel confused and helpless, not knowing what to say or how to offer support.
Perhaps chronic fatigue syndrome or fibromyalgia has stricken your spouse, your child, your sibling, or a good friend. Whatever the case, its difficult for you to see a loved one in such pain. The illness presents new challenges to your relationship, as well. It may also worsen any existing relationship problems. You want to be positive and helpful but you dont know what to do or say. Maybe youve tried to be supportive and find that your loved one reacts in frustration. What should you do?
These tips from the Chronic Fatigue and Immune System Dysfunction Syndrome Association of America may help:
Most people know very little, if anything, about CFS and FMS. Both conditions involve much more than a little fatigue or a few aches and pains. If you have a friend or loved one with CFS or FMS, you should learn as much as possible about these conditions. The more you understand your loved ones condition, the better you will be able to support her.
Chronic Fatigue Syndrome
Chronic fatigue syndrome is a chronic, debilitating disorder that affects the brain and multiple parts of the body. It causes extreme fatigue that is not relieved with bed rest and is often made worse by physical or mental activity. Symptoms last at least six months and are severe enough to impair or interfere with daily activities. Symptoms vary from person to person and may include:
Chronic fatigue that is not relieved with bed rest and often worsens with physical or mental activity
Joint pain without swelling or redness
Trouble with short-term memory or concentration
Forgetfulness or confusion
Irritability, anxiety, mood swings, or depression
Low grade fever, hot flashes, or night sweats
Tender lymph nodes
Trouble sleeping or not feeling refreshed after sleep
Prolonged fatigue lasting 24 hours or more after exercise
Eyes sensitive to light
Chest pain or shortness of breath
Fibromyalgia is a chronic disorder that causes widespread pain and stiffness in the muscles, tendons and ligaments, along with non-refreshing sleep and fatigue. Symptoms vary from person to person and may include:
Generalized fatigue or tiredness
Reduced physical endurance
Generalized aches and pains of muscles, tendons, and ligaments
Muscle tightening or spasms
Pain in specific areas of the body, especially:
Back (upper and lower)
Hips and thighs
Insomnia or poor sleep
Sensations of numbness or swelling (although swelling is not actually present)
Chronic headaches, including migraines
Morning stiffness, worst on first arising
Do Not Invalidate
Sometimes people think that individuals with CFS or FMS are lazy, exaggerating their symptoms, or suffering from a psychiatric condition. They may mistakenly believe that their loved one just needs to push herself a little harder. People with CFS or FMS often feel invalidated when they hear:
You look good to me. (Underlying invalidating message: You dont look sick, therefore you must be exaggerating or faking.)
Oh, Ive had symptoms like that before. I get tired like that too. (Underlying invalidating message: So, whats the big deal? Everybody gets tired. Get some rest.)
Have you tried (a suggested treatment)? (Underlying invalidating message: If you dont take this remedy or do anything to help yourself, its your own fault that youre still sick.)
Are you still sick? (Underlying, invalidating message: Whats wrong with you? Its your fault that youre still sick.)
Acknowledge and Validate the Persons Experience
People with CFS or FMS often face a number of challenges, including:
Not being taken seriously by their families, friends, employers, and even their doctors and other healthcare providers
The unpredictability of their illness
Decreased ability to participate in previous levels of professional, social, educational, and personal activities
Dependency and a sense of isolation
Many people use denial to deal with a loved ones chronic illness. Rather than listening, believing, and showing compassion for what the person is going through, they discuss the facts and minimize the severity of the situation.
When you fully acknowledge your loved ones situation, you are letting him or her know that you truly care, love, and support her. The following tips can help:
Acknowledge the Difficulty: I cant imagine how difficult all these changes must be for you.
Acknowledge Losses, Sadness, and Anger: Im so sorry that you had to give up your job. It must be horrible that you dont have the strength to continue your education.
Inquire and Listen With Compassion: When you ask your loved one how they are feeling, they may be feeling ill, tired, achy, or depressed. If you only want to hear that your loved one is feeling good, stop asking how they are feeling. Otherwise, they may sense your expectation, disappointment, disinterest, or inability to understand. Instead you might want to ask: How are you managing things today? or Whats going on?
Be Supportive and Understanding
Chronic illness presents many relationship challenges at a time when comfort and social support are of utmost importance. Here are some ways you can help:
Be patient. Remember that your loved one has had to make many adjustments and is doing the best that she can.
Provide frequent reassurances of your love and support.
Offer practical help, such as running errands, helping with household chores, and shopping.
Take your loved one to medical appointments. Show an interest in her care and provide emotional support.
Find ways to spend time together, doing low-energy activities such as watching a movie or video, eating a meal, going on a picnic, playing a game, sitting in the park, or giving a massage.
Dont feel that you have to fix problems or give advice. Many times, just being there, listening, and showing compassion is enough.
Express gratitude for whatever your loved one can give you, in spite of his or her limits.
Ask how you can help your loved one.
Express admiration for the strength and courage you see in your loved one as she copes with the challenges of the illness.
Your loved one may have mood swings due to the stress and challenges of having a chronic illness. Do not take emotional reactions personally.
Try to be sensitive to your loved ones feelings and needs. Listen and learn to be perceptive.
Stay in contact with your loved one. Even if he she isnt as active and involved in mutual interests or gatherings as they once were, be sure to invite her anyway.
Expect Changes and Unpredictability
CFS in particular, is a very unpredictable illness. Symptoms can change, so your loved one may not be able to predict how she will feel hours or even minutes ahead of an event. Try to be sensitive to this and expect the following situations:
It will sometimes take longer than usual for her to do certain things.
It may be hard for her to make definite plans.
She may not have the energy to spend with you at certain times.
She may not remember certain things (CFS can cause cognitive problems and brain fog.)
She may have unpredictable emotional ups and downs.
Take Care of Yourself and Your Relationship
CFS and FMS are difficult illnessesnot just for the sufferer, but for those who care. Its normal to feel disappointed, impatient, guilty, frustrated, helpless, and cheated. Its important that you take adequate care of yourself so that you can provide support.
This means eating properly, getting regular exercise, managing your stress, and talking openly about your feelings with a family member, a friend, or a professional counselor. Talk with your loved one about how the illness affects your relationship. Ask how you can help each other. Keep in mind that support from family and friends is essential to the well-being of people with CFS and FMS.
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America
Chronic Fatigue Syndrome
Centers For Disease Control and Prevention
National Fibromyalgia Association
The American Fibromyalgia Syndrome Association, Inc. website. Available at: http://www.afsafund.org/ . Accessed March 6, 2006.
Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov . Accessed March 6, 2006.
Chronic Fatigue and Immune Dysfunction Syndrome Association of America website. Available at: http://www.cfids.org/ . Accessed March 6, 2006.
National Institutes of Health website. Available at: http://www.nih.gov/ . Accessed March 6, 2006.
Last reviewed January 2006 by Jill Landis, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.