DUST ON THE BIBLE

Amy Scholten, MPH

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 (CFS) or fibromyalgia (FMS) 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:

Seek First to Understand

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 one’s condition, the better you will be able to support her or him.

Chronic Fatigue Syndrome (CFS)

Chronic fatigue syndrome (CFS) 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
General weakness
Muscle aches
Joint pain without swelling or redness
Headaches
Trouble with short-term memory or concentration
Forgetfulness or confusion
Irritability, anxiety, mood swings, or depression
Low grade fever, hot flashes, or night sweats
Sore throat
Tender lymph nodes
Trouble sleeping or not feeling refreshed after sleep
Prolonged fatigue lasting 24 hours or more after exercise
Eyes sensitive to light
Allergies
Dizziness
Chest pain or shortness of breath
Nausea

Fibromyalgia (FMS)

Fibromyalgia is a chronic disorder that causes widespread pain and stiffness in the muscles, tendons and ligaments, along with un-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:
- Neck
- Shoulders
- Chest
- 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 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.�?

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 health care 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 him or 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.�?/FONT>

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.�?/FONT>

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?�?“What’s going on?�?/FONT>

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 he or 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 his or 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.
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 in your loved one as he or 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 he or she isn’t as active and involved in mutual interests or gatherings as they once were, be sure to invite him or her anyway.

Expect Changes and Unpredictability

CFS in particular, is a very unpredictable illness. Symptoms can be changeable, 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 him or her do certain things.
It may be hard for him or her to make definite plans.
He or she may not have the energy to spend with you, at certain times.
He or she may not remember certain things (CFS can cause cognitive problems and “brain fog.�?
He or she may have unpredictable emotional ups and downs.

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. 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.

Important Announcement The MSN Groups service will close in February 2009. You can move your group to Multiply, MSN’s partner for online groups. Learn More
DUST ON THE BIBLE	[email protected]