Chronic fatigue syndrome (CFS) and fibromyalgia (FMS) are debilitating and poorly understood chronic diseases that can strike people of both sexes and of all ages. Couples, friends and relatives of people with CFS or FMS may feel confused and helpless, not knowing what to say or how to offer help.
It is very difficult to observe impassively the pain and the limitations that these illnesses provoke, this added to the mood swings, the lack of sleep, the irritability that triggers the chronic pain and the lack of healthy rest, convert the daily life of sick people and family members in a constant struggle to maintain balance and maintain family unity.
Not everyone is capable of facing this situation and until reaching acceptance there is a long way where psychological support is necessary and take into account this series of keys that are very important:
Put yourself in your family’s place and try to understand it
Most people know very little, if they know anything, about CFS and FMS. Both diseases involve much more than just “a little fatigue” or “a few aches or pains”. If you have a friend or loved one with CFS or FMS, you should learn as much as you can about these diseases. The more you know about the illness of your loved one, the more you will be able to support it.
CHRONIC FATIGINE SYNDROME (CFS)
Chronic fatigue syndrome (CFS) is a chronic and debilitating disorder that affects the brain and multiple parts of the body. This causes extreme fatigue that does not decrease resting in bed and often worsens with physical or mental activity. The symptoms last at least six months and are severe enough to damage or interfere with daily activities. Symptoms vary from person to person and may include:
· Chronic fatigue that does not decrease resting in bed and often worsens with physical or mental activity
· Weakness in general
· Muscle pains
· Joint pain without inflammation or redness
· Problems with short-term memory or concentration
· Forgetfulness or confusion
· Irritability, anxiety, mood swings or depression
· Low-level fever, hot flashes, or night sweats
· Sore throat
· Sensitive lymph nodes
· Problems sleeping or not feeling rested after sleeping
· Prolonged fatigue that lasts 24 hours or more after exercising
· Sensitivity in the eyes 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-comforting sleep and fatigue. Symptoms vary from person to person and may include:
· Tiredness or generalized fatigue
· Reduction of physical resistance
· Generalized aches and pains of muscles, tendons and ligaments
· Muscle stiffness or spasms
· Pain in specific areas of the body, especially:
or Back (upper and lower)
o Hips and thighs
· Insomnia or lack of sleep
· Feeling of numbness or inflammation (even if inflammation is not present)
· Chronic headaches, including migraines
· Morning stiffness, it is worse when it arises for the first time
Do not invalidate them, do not make them feel worse
Some people think that individuals with CFS or FMS are lazy, exaggerate their symptoms or suffer from a psychiatric illness. These people may mistakenly believe that their loved one just needs to be pushed a little harder. People with CFS or FMS often feel invalidated when they hear:
– “I look good” (underlying invalidating message: “You do not look sick, so you must be exaggerating or pretending”)
– “Oh, I’ve had symptoms like that.” “I get tired in the same way too” (underlying invalidating message: “So what is the problem? Everyone gets tired, rest a little”)
– “Have you tried … (a suggested treatment)?” (Underlying invalidating message: “If you do not take this remedy or do something to help yourself, it is your fault that you are still sick”)
– “Are you still sick? (underlying invalidating message: “What’s wrong with you? It’s your fault that you’re still sick”).
Recognize the pain of your family member or friend
The fact that you deny the disease does not make it disappear far from it.
People with CFS or FMS often face many challenges, including:
· Not be taken seriously by family members, friends, bosses and even their doctors and other health professionals
· The uncertainty of your illness
· Decrease in the ability to participate in previous levels of professional, social, educational and personal activities
· Dependency and feeling of isolation
Many people use denial to cope with a chronic illness of a loved one. Instead of 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 recognize your loved one’s situation you are letting them know that you really care, love and support them. The following tips can help:
-Recognize the difficulty: “I can not imagine how difficult all these changes should be for you”
-Recognize losses, sadness and anger: “I feel like you have to quit your job.” “It must be horrible that you do not have the strength to continue your education”
– Ask and listen with compassion: When you ask your loved one how he feels, they may be feeling sick, tired, in pain or depressed. If you just want to hear that your loved one feels good, stop asking him how he feels. Otherwise they may feel your expectations, disappointment, disinterest or inability to understand. Instead, you might ask, “How are you doing today?” Or “How’s it going?”
Be understanding and compassionate
Chronic diseases present many challenges in relationships at a time when comfort and social support are of the 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 he or she can.
· Provide frequent comfort of love and support.
· Offer practical help such as running errands, helping with household chores and shopping.
· Take your loved one to medical appointments. Show interest in your care and provide emotional support.
· Find ways to spend time together doing low-intensity activities such as watching a movie or video, eating something, going to the field, playing a game, sitting in the park or giving a massage.
· Do not feel that you have to “fix” problems or give recommendations. Many times the mere fact of being there and showing compassion is enough.
· Express appreciation for anything your loved one may give you, regardless of your limits.
· Ask how you can help your loved one.
· Express admiration for the strength and courage you appreciate in your loved one as you get ahead with the challenges of the disease.
· Your loved one may have changes in his mood due to stress and the challenges of suffering from a chronic illness. Do not take emotional reactions as personal.
· Try to be sensitive to the feelings of your loved one. Listen and learn to be perceptive.
· Stay in touch with your loved one. Even if he is not as active and involved in mutual interests or meetings as he once was, be sure to invite him anyway.
Accept and face the changes
CFS in particular is a very unpredictable disease. Symptoms may vary, so your loved one may not be able to predict how he will feel hours or even minutes after an event. Try to be understanding with this and wait for the following situations:
· Sometimes it will take longer than usual to do certain things.
· It will be difficult for him to make definitive plans.
· You may not have the energy to spend time with you, sometimes.
· You may not remember certain things (CFS may cause cognitive problems and “brain fog.”)
· Could have unpredictable emotional highs and lows.
Take care of yourself in order to provide care and support
CFS and FMS are difficult diseases not only for those who suffer them, but for those who care for them. It is normal to feel disappointed, impatient, guilty, frustrated, helpless and deceived. It is important that you take proper care of yourself so that you can provide support. This means eating appropriately, exercising regularly, controlling your stress level and talking openly about your feelings with a family member, a friend, or a professional counselor. Talk to your loved one about how the disease is affecting your relationship. Ask how they can help each other. Keep in mind that support from family and friends is essential for the well-being of people with CFS and FMS.
You know your loved ones, you know how they are, how hard and active they have been, do not allow them to treat you like a bunch of lazy people, you know them better than anyone, do not let any health worker make you feel worse than you they already feel.