Meeting the Challenge of CFS
DOCTORS at a symposium were discussing the treatment of CFS (chronic fatigue syndrome) during a telecast when one of them said: “These patients all look as healthy as everybody on this panel.” Because such patients don’t look sick, they are often treated in a way that increases their misery.
Patricia, a CFS sufferer in Texas, noted: “Sometimes I have felt like Job, whose companions weren’t always helpful.” A visitor, for example, once told her: “You look fine to me! I thought you were really sick. You and my mother-in-law have a lot in common. She is a hypochondriac too.”
Such comments can be devastating, and they constitute a major challenge of CFS. “The emotional pain of being put down for not ‘trying’ is beyond description,” explained Betty, a CFS patient in Utah, “and is the worst part of the suffering CFS brings.”
Understanding and Love Needed
Betty expressed the sentiments of perhaps every CFS sufferer when she said: “We don’t want pity. We don’t need sympathy. But, my, how we could use some understanding! God knows our difficulties and sorrow, and that is most important. But it is also vital that we get emotional support from our Christian brothers and sisters.”
For many people, however, CFS remains difficult to understand, as a young sufferer from Washington State noted recently. “The one thing I wish people had more of is empathy,” she said, “not sympathy, but empathy. And that is impossible because not many people have ever dealt with an illness like this.”
Yet, it shouldn’t be impossible to understand CFS sufferers. Granted, their physical condition may be beyond our experience. But we can learn about their illness until we grasp just how sick they truly are. Unlike AIDS, which kills, one patient explained, CFS “just makes you wish you were dead.” Deborah, who became ill in 1986, confessed: “For a long time, I prayed every night to God to allow me to die.”—Compare Job 14:13.
Of course, we want to be encouraging, to help sufferers meet the challenge of CFS, but unfortunately our comments may do the opposite. For example, a well-meaning visitor suggested to a CFS sufferer: “What you need is to drink some warm milk at night. It will help you sleep, and you’ll be all right in a few days.” That comment revealed a total misunderstanding of CFS. It hurt the sufferer more than it helped.
Sick ones may often feel unable to do such things as attend Christian meetings. When they do come, the effort involved may be far beyond what we comprehend. So rather than draw attention to their previous absences, we could simply say: “It’s so nice to see you. I know it’s not always easy for you to be here, but we’re glad to see you tonight.”—See accompanying box.
The nervous system of CFS sufferers is often affected, making even normal interaction with people difficult. “We need to be a buffer between them and others,” explained Jennifer, whose husband has CFS. “We must help them by allowing them privacy, by never getting upset with them, and by helping them avoid any kind of confrontation.”
Jennifer admitted that the illness of sufferers can be taxing on family members, who may become tired of doing everything for them. But as she noted, if patients are not allowed to rest, their recovery will likely be delayed, and so everyone will lose in the long run. Happily, the illness apparently is rarely if ever contagious, although there does seem to be a hereditary predisposition to the affliction.
Tottie, a CFS sufferer and wife of a traveling overseer of Jehovah’s Witnesses, said that for years her husband has helped her meet the challenge of the illness. She lets him know of her appreciation but noted: “Friends often inquire about me and my welfare, but Ken needs encouragement too.”
Positive Prognosis—But Danger
CFS is rarely if ever fatal. That knowledge may help you meet the challenge. Most get better in time, and many recover. Dr. Anthony Komaroff noted: “Not one patient that we have seen out of the hundreds that we have studied has had a chronic, progressive downhill course where they have gotten worse and worse and worse over time. No one has had that. So unlike some other illnesses that progress inexorably, this illness is quite different.”
In confirmation, Dr. Andrew Lloyd, a leading CFS researcher in Australia, said: “When recovery occurs, and we believe that happens commonly, that recovery is complete. . . . That, therefore, implies that whatever this process is that produces this fatigue state is completely reversible.” Apparently patients have no detectable damage to body organs after recovering.
Deborah, who had regularly prayed to die because she felt so sick, finally improved. She feels like her old self and said recently that she plans to rejoin her husband in the full-time ministry. Others have enjoyed similar recoveries. Yet, there is need for caution. Why?
Keith, who suffered a relapse, warned: “It’s very important not to underestimate this problem, not to be too quick to think it has passed.” When feeling well again, Keith reentered the full-time ministry and resumed his athletic activity, regularly running and lifting weights. But, tragically, the illness returned, and he was bedridden again!
This is the insidious nature of the illness; relapses are common. Yet, they are difficult to avoid. As Elizabeth explained: “It is so hard not to try to make up for lost time when you begin feeling better. You so badly want to forget about sickness—you want to do things.”
For that reason it requires great effort and patience to meet the challenge of CFS.
What Sufferers Can Do
It is important that sufferers adjust mentally to a chronic illness that has an unpredictable course. Beverly, a longtime sufferer, explained: “If I start believing I have really got well during my good weeks or months, I usually fall harder than ever physically. So I constantly work on accepting my limitations.” Keith said: “Patience is probably the most important factor.”
CFS sufferers need to conserve their energy and permit their bodies to heal. Thus, those who are successfully coping with CFS emphasize the value of what is called aggressive rest therapy. This means preparing aggressively for coming events by getting extra rest in advance. As a result, CFS sufferers may be able to attend Christian assemblies or other special events without suffering unduly afterward because of the exertion.
Vital, too, is maintaining a calm, mild spirit, since mental or emotional stress can precipitate a relapse just as easily as can excessive physical exertion. So good advice is: “Don’t waste your energy defending yourself.” Yes, avoid trying to explain your condition to skeptics who don’t understand.
If you suffer from CFS, you need to remember that it is not what others may think of you that matters but it is what our Creator, Jehovah God, thinks. And he appreciates your situation and truly loves you for whatever you do to serve him. You can trust that Jehovah and the angels are watching, not your productivity, but, as with Job, your attitude, endurance, and faithfulness.
Susan, who has been bedridden with CFS for the better part of two years, noted that one of the most devastating features of CFS is that a person can feel as if there were no purpose to life. So she recommends: “Find things that bring you joy or fulfillment. I have three African violet plants, and I look at these every day for new buds.” But of greatest importance, she says, is to “rely on Jehovah through prayer and to make your spirituality a priority.”
Many sufferers say they find it helpful to listen to tape recordings of the Bible and of the Watchtower and Awake! magazines. Significantly, Priscilla, mentioned in the second article, commented that once a person reaches the point where he stops dwelling on what has been lost, “CFS isn’t so overwhelming anymore.” She said: “To keep myself from thinking that this condition is going to last forever, I have placed encouraging scriptures in conspicuous spots around my room.”
What About Treatment?
At present little more can be done medically than treat the symptoms. There were high hopes for the experimental drug Ampligen. Many taking the drug seemed to improve, but adverse side effects experienced by some caused the U.S. Food and Drug Administration to put its further use on hold.
Sleep disturbances, including insomnia, are common with CFS. Interestingly, an antidepressant medication—sometimes one hundredth of the dose taken for depression—helps some, but not all, patients sleep better and thus improve. Beverly avoided such drugs for years but then tried one. “I was helped so tremendously,” she said, “I only wish I had started sooner.”
“Many other methods [including “alternative” treatments that some patients find appealing when standard measures fail] have been tried for treating CFS,” noted The Female Patient. “These include a variety of medications, physical therapy, . . . acupuncture, homeopathy, naturopathy, anticandidal therapy, and ayurvedism, among others.”
This medical journal stated: “Regardless of personal beliefs, the physician should have some knowledge of such [treatments] to better understand and counsel the patient. Many patients are grateful just to find a physician who listens to them and takes their list of complaints seriously. . . . Most patients with CFS can be helped to feel better—even if they are only reassured that they have a medical ally—and many can be greatly improved.”
Since there is no cure, some question the value of going to a physician. The vital benefit of seeking such help is that tests can exclude other diseases that may have similar symptoms, such as cancer, multiple sclerosis, lupus, and Lyme disease. If these are identified at an early stage, valuable treatment can be given. Emergency Medicine recommends to physicians: “Once you’ve made the diagnosis, your best course of action is to refer the patient to a chronic fatigue syndrome study center.”
Rest is recognized as the best treatment, but a careful balance must be struck. So the best advice is: Learn to pace yourself. Know your limitations, and work within them, day by day, week by week, month by month. Gentle exercises, such as walking or swimming in a warm pool, can be beneficial as long as they are not taken to the point of either physical or mental fatigue. A healthy diet that helps to strengthen the immune system is also important.
Hopelessness may accompany this disease, as was tragically illustrated by one sufferer named Tracy who despaired and committed suicide. But death is not the answer. As a bereaved friend said: “I know what Tracy really wanted. She didn’t want to die. She wanted to live—but to live free from suffering. And that must be our goal.” Yes, it is an excellent goal. So focus your hopes, not on dying, but on surviving to reach that goal, whenever it comes.
CFS is one of many strange illnesses to add to the list of scourges that afflict modern mankind. Whatever progress medical science may make, it will take more than medical skill to cure them all. The Great Physician, Jehovah God, has in mind nothing less—a worldwide cure of all sicknesses—through the loving administration of his Kingdom government. At that time “no resident will say: ‘I am sick.’” That is the sure promise of God!—Isaiah 33:24.
[Box on page 12, 13]
How Others Can Help
What Not to Say and Do
◆ “You sure look good” or, “You don’t look sick.” Saying such things makes the sufferer feel as if you don’t believe in the severity of his symptoms.
◆ “I feel tired too.” This comment minimizes the suffering. CFS involves much more than merely being tired. It is a painful, debilitating disease.
◆ “I’m tired. I think I might have CFS too.” This may be said in jest, but there is nothing funny about CFS.
◆ “I wish I could take a few days off to catch up on my rest.” CFS patients are not on vacation.
◆ “You were working too hard. That’s why you got sick.” This may imply to the sufferer that he is to blame for what has happened.
◆ “How are you?” Don’t ask unless you really want to know. Frankly, the sufferer generally feels terrible but may not want to complain.
◆ “So-and-so had CFS, and she was only sick for a year.” Each case of CFS is different in duration and severity, and pointing to another’s early recovery can be discouraging to one suffering longer.
◆ Don’t offer medical advice unless you are asked for it and are qualified to give it.
◆ Don’t imply to CFS patients that if they have a setback, it must be because of something they did.
What to Say and Do
◆ Show that you believe they are really sick.
◆ Make a phone call, or go to visit. Calling first is usually a good idea.
◆ Respect any restrictions as to visitors or phone calls.
◆ If a person cannot have visitors, send a card or a letter. Patients often look forward to opening the mail each day.
◆ Be compassionate. Sometimes this just means acknowledging what the ill person is experiencing.
◆ Offer to run errands, do their grocery shopping, take them to the doctor, and so forth.
◆ You can simply say: “It’s so nice to see you. Jehovah really appreciates your faithful endurance.”