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When a Loved One Has Chronic Fatigue Syndrome or Fibromyalgia
Chronic fatigue syndrome (CFS) and fibromyalgia (FMS) are debilitating 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, it’s 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 don’t know what to do or say. Maybe you’ve 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.
#1 Understand the Condition
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 one of these conditions, you should learn as much as possible. The more you understand, the better you will be able to offer support.
#2 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 don’t look sick, therefore you must be exaggerating or faking.”
- “Oh, I’ve had symptoms like that before. I get tired like that too.”—Underlying invalidating message: “So, what’s the big deal? Everybody gets tired. Get some rest.”
- “Have you tried (a suggested treatment)?”—Underlying invalidating message: “If you don’t take this remedy or do anything to help yourself, it’s your own fault that you’re still sick.”
- “Are you still sick?”—Underlying, invalidating message: “What’s wrong with you? It’s your fault that you’re still sick.”
#3 Acknowledge and Validate the Person’s 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 one’s 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 one’s situation, you are letting her know that you truly care, love, and support her. The following tips can help:
- Acknowledge the difficulty: “I can’t imagine how difficult all these changes must be for you.”
- Acknowledge losses, sadness, and anger: “I’m so sorry that you had to give up your job.” "It must be horrible that you don’t 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 “What’s going on?”
#4 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, eating a meal, going on a picnic, playing a game, sitting in the park, or giving a massage.
- Don’t 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 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 one’s feelings and needs. Listen and learn to be perceptive.
- Stay in contact with your loved one. Even if she isn’t as active and involved in mutual interests or gatherings, be sure to invite her anyway.
#5 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.
#6 Take Care of Yourself and Your Relationship
CFS and FMS are difficult illnesses—not just for the sufferer, but for those who care. It’s normal to feel disappointed, impatient, guilty, frustrated, helpless, and cheated. It’s important that you take adequate care of yourself so that you can provide support.
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 Association of America
National Fibromyalgia Association
Fibromyalgia Information and Local Support
Women's Health Matters
Chronic Fatigue Syndrome. American Academy of Family Physicians. Family Doctor.org website. Available at: http://familydoctor.org/online/famdocen/home/common/pain/disorders/031.html. Updated November 2009. Accessed November 15, 2010.
Fibromyalgia. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/arthritis/arthritis/fibromyalgia.htm. Updated June 2008. Accessed July 29, 2008.
Prevalence. Chronic Fatigue and Immune Dysfunction Syndrome Association of America website. Available at: http://www.cfids.org/about-cfids/prevalence-study.asp. Accessed July 29, 2008.
What is fibromyalgia? The American Fibromyalgia Syndrome Association website. Available at: http://www.afsafund.org/ . Accessed July 29, 2008.