by Denise Young
December 10, 2000
[Inserting tape. A familiar
voice begins . . .]
You are embarking on one of
the most critical missions of your life. It is a matter of great importance not
only to yourselves, but also to the people you are being asked to help. A family
member, one among your midst, has been diagnosed with Chronic Fatigue and
Immunodysfunction Syndrome (CFIDS) or Fibromyalgia (FMS) and it is up to you,
Families, to help them. Your mission, should you decide to accept it, will be to
. . .
Although they may push you away and become unbearable at times, you should always remember that it is the pain, fatigue, and frustration that cause these actions, not necessarily the desire to be left alone. When they admit that they cannot do something, you should always remember that it is just as hard for them to say NO as it is for you to hear it. Should they forget an appointment or special event, you must try to understand that their minds are fully focused on combating the pain and fatigue warring within them. It has nothing to do with you or their love for you. If they take naps in the middle of the day, you should understand that it is not because they are lazy or depressed, but rather sleep is often a distant dream, and they have to take it anytime and anyway they can get it. When they ask you to repeat something you've said, you should understand that it's not because they are disinterested or distracted. Rather, they cannot concentrate or focus on what you are saying because of brain fog.
Negative comments only add to the frustration and isolation CFIDS and FMS sufferers must deal with. Avoid helpful phrases and armchair diagnoses such as you don't look sick; you're in a rut; you need to get out more; you need some vitamins, some time off, or a vacation. Never tell them that they are depressed, crazy, lazy, or seeking attention. Phrases and comments such as these are hurtful and create more tension in a person who is already racked with pain, fatigue and emotional turmoil. Evade comments such as, but you said you would; but why can't you go; but you're not even trying. They already feel guilty enough about not being able to perform their duties and responsibilities. They already push themselves to the edge of the cliff. Comments such as these can send them barreling over it.
OFFER EMOTIONAL SUPPORT
Instead of ignoring or denying the problem, get educated about their illness. There are numerous web sites online that offer great information on CFIDS and FMS. There are organizations and support groups around the country that offer free pamphlets and information for the asking. Be a strong shoulder for them to rely on when they need to cry. Put your arms around them, and let them know that no matter what happens in the future, you will be there for them. Listen to them when they need to talk about their feelings. Turn off the television, and really hear what they have to say. You don't have to respond; just listening will be helpful enough. Go with them when they go to the doctor, to physical therapy, or to have terrifying tests. You don't have to go into the room with them. Just knowing you are there will be enough. Being consistent with these actions will elicit trust and create a stronger bond between yourself and your family member.
Many CFIDS and FMS patients are wives and mothers with husbands and children who depend on them for every aspect of life. Cooking, cleaning, laundry, car-pooling, homework overseeing, shopping, nurturing, emotional supporting, bathing, bedtime stories, and a myriad of other duties are expected from them. The overwhelming tasks of a wife and mother are strenuous under normal circumstances, but near impossible for the CFIDS/FMS patient. Instead of expecting what the patient can no longer maintain, learn to take care of yourself. Bring home take-out or cook a meal. Learn how to do the laundry and wash clothes once a week. Pick up after yourself, and do your part to keep the house clean. Offer to do some of the shopping or to take over the responsibility of paying the bills. There may be days when the patients may feel like doing these things themselves, but lessening their responsibilities will always be welcomed. Help is not a luxury for CFIDS and FMS patients; it is a necessity.
Pain is a constant companion for CFIDS and FMS patients. Stiffness; cramping; loss of muscle control; staggering; intense dizziness; hypersensitivity to light, sounds, smells, and touch; allergies; debilitating fatigue; emotional turmoil; depression; and a host of other symptoms also plague them on a regular basis. When your family member is slow about returning calls, completing tasks, or answering your questions, please be patient. External pressure can only serve to aggravate the symptoms, creating a more intense environment. Do not try to force your family member to do things that he or she tells you they cannot do. Remember that they are now governed by their illnesses and cannot control what they feel or when they feel it. They must listen to their bodies and their minds now. They are doing the best they can, given what they have to work with.
PRACTICE TOLERANCE AND
This, Families, may be the most important aspect of your entire mission. You must learn to tolerate changes in your life as a direct result of your patient's illness. Living with CFIDS and FMS is like living life - 24 hours a day seven days a week - on a roller coaster. One moment they may be up, feeling well, laughing, joking, looking the part of health. The next minute, they may be down, racked with pain and suffering. Inevitably, there will be changes in your life. You must learn to tolerate the endless shifts in mood, attitude, and climate that your patient will exhibit. Having your life swept away from you in one fell swoop is never easily managed, and there are continual fluctuations in emotions as a necessary part of the process of coming to grips with chronic illness.
You must accept that your
family member is no longer the person they once were. They may look exactly the
same, but they are not the same. They have changed on a deeper inner level and
will continue to do so as the illness progresses. You should refrain from
comparing life before CFIDS and FMS to your life after. CFIDS and FMS sufferers
are well aware of what they used to be and what they have been reduced to.
Reminding them of this serves no useful purpose. You must accept, no matter how
difficult, that your family member is sick. Denial will only act as a wedge
between you and your family member and will prolong any attempts at fighting the
diseases themselves. Your family member needs you now, and despite all that you
currently feel, you need them too.
* * *
This, Families, is your
mission. These instructions may never be spoken of outside of this notice. You
may never hear these words come directly from your family member, but they think
them. Every minute of every day, they long for these things. Your role in this
endeavor will be difficult, but it is possible. Should you decide to accept this
mission, your ailing family member will appreciate your efforts. They will love
you even more for trying, even if you sometimes fail. They will be better for
knowing you are there for them, positively and unconditionally, and with your
help, living with CFIDS and FMS will be easier to deal with.
[This tape will now
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