Chronic fatigue syndrome (CFS) may have struck a family member. Most certainly, you know someone who has been stricken by this misunderstood and debilitating illness. CFS can strike both sexes and any age group. You may feel helpless and confused about what to say or do for a stricken relative or friend.
Seeing a loved one in such pain is difficult. Your relationship experiences new challenges brought on by the illness. If you already have existing relationship problems, they are worsened by the stress such challenges bring.
You want to be positive and supportive but what do you say or do? You may have even tried to be supportive only to find your loved one reacts with frustration. What are you to do? The Chronic Fatigue and Immune System Dysfunction Syndrome Association of America has offered suggestions that may assist you:
You must first understand the condition.
Most of us know almost nothing about CFS. It goes far beyond a little fatigue or a few aches and pains. You should learn as much as possible about CFS if you have a relative or friend who suffers with it. The more you learn, the more support you will be able to offer.
CFS affects the brain and multiple parts of the body. It causes extreme fatigue that is not relieved with bed rest. This fatigue is often made worse by physical or mental activity. Symptoms of CFS last at least six months and become severe enough to impair or interfere with daily activities. Symptoms of CFS vary from person to person and may include:
* Chronic fatigue that is not relieved by bed rest and often worsens with physical or mental activity
* General weakness
* Muscle aches
* Joint pain absent of swelling or redness
* Short-term memory or concentration problems
* Confusion and/or forgetfulness
* Irritability, anxiety, mood swings, or depression
* Low grade fever, hot flashes, or night sweats
* Sore throat
* Tenderness in the lymph nodes
* Sleeplessness 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
Do not invalidate the condition.
People sometimes believe that individuals with CFS exaggerate their symptoms or they are lazy or suffer from a psychiatric condition. These people may believe their loved one only needs to push a little harder. You can invalidate someone who suffers with CFS when you say:
* You look good to me. (meaning: 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. (meaning: So, what’s the big deal? Everybody gets tired. Get some rest.)
* Have you tried (a suggested treatment)? (meaning: 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? (meaning: What’s wrong with you? It’s your fault that you’re still sick.)
Acknowledge and Validate the Person’s Experience.
People with CFS often face many challenges, including:
* Not being taken seriously by their families, friends, employers, and even their doctors and other healthcare providers
* The unpredictability of their illness
* A decreased ability to participate in professional, social, educational, and personal activities
* Isolation and a sense of dependency
When you fully acknowledge your loved one’s condition, you demonstrate to him or her you truly care, love, and support him or her. The following tips can help:
Acknowledge the difficulty: I can’t imagine how difficult all these changes must be for you.
Acknowledge loss, sadness, and anger: I’m really sorry you had to give up your job. It must be horrible to not have the strength to continue your education.
Inquire and listen with compassion: If you only want to hear that your loved one is feeling good, don’t ask how they are feeling. Otherwise, they may sense your expectation, disappointment, disinterest, or inability to understand. You might ask: How are you managing things today? or What’s going on?
Be supportive and understanding.
Chronic illness presents many relationship challenges at a time when comfort and social support are of the highest importance. Here are some ways you can help:
* Be patient. Remember, your loved one has had to make many adjustments and is doing the best he can.
* Provide frequent reassurances of your love and support.
* Provide practical help by as running errands, helping with household chores, and shopping.
* Take your loved one to medical appointments. Show an interest in his care and provide emotional support.
* Find ways to spend time together, doing low-energy activities like watching a video, dining, playing a game, sitting in the park, or giving a massage.
* Don’t feel it’s your responsibility to fix problems or give advice. Many times, just being there, listening, and showing compassion is all that’s needed.
* Express gratitude for whatever your loved one can give you, in spite of his or her limits.
* Ask how you can help.
* Give admiration for the strength and courage you see in your loved one as he copes with the challenges of the illness.
* Do not take emotional reactions personally. Your loved one may have mood swings due to the stress and challenges of having a chronic illness.
* Listen and be perceptive. Try to be sensitive to your loved one’s feelings and needs.
* Stay in contact with your loved one. He may not be as active and involved in mutual interests as he once was, but invite him anyway.
Anticipate changes and unpredictability.
CFS is a very unpredictable illness. Symptoms can change, so your loved one may not be able to predict how he will feel hours or even minutes ahead of an event. Be sensitive to this and anticipate the following situations:
* Sometimes, it may take longer than usual for him to do certain things.
* It may be hard for him to make definite plans.
* He may want to be alone instead of being with you when his energy is very low..
* CFS can cause cognitive problems and brain fog. He may sometimes forget things.
* Unpredictable emotional ups and downs may occur.