A 1992 article part 1

[Guest guest]

This is the 1st part of an article that appeared in 1992 as the last of

a series in a religious magazine. I have removed references that might

offend some people and removed some dated material [from some of the

Biggies in CFS research no less]

It is amazing how ahead of their time this article was.Shame others

weren't as far at the time.

*** g92 8/22 11-15 Meeting the Challenge of CFS ***

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.

, 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 , 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.”

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

--------------, 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.----------

-------------SOME DATED INFO WAS HERE _ FROM SOME OF THE BIG NAMES IN

CFS

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?

, 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, 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 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.” 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-------, 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.

, 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 [GOD] through prayer and to make

your spirituality a priority.”

-------------

-----------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.”