Chronic Fatigue Syndrome (CFS) has become a familiar term since diagnostic criteria for the illness were first established in 1988, but the illness is still woefully misunderstood by many. Myths and misconceptions about CFS are harmful to those who live with it. Isn't it time to clear up the confusion surrounding this condition?
Consider the first and most infuriating myth: CFS isn't a real illness. When I was diagnosed with CFS in 1998, it became immediately clear to me that the people around me were divided into two camps: the believers and the doubters. The latter group - which included some medical professionals - suspected that I wasn't actually sick. To those who suffer from the debilitating, draining effects of CFS, the insinuation that the illness isn't real is insulting. Being written off as a hypochondriac doesn't exactly support the healing process.
My experience with doctors was typical of many CFS patients at that time. Before my eventual diagnosis by a naturopath, I was under the care of a particularly patronizing physician who was unable to find any physiological evidence of illness, so she dismissed my symptoms as "stress." At a time when I'd never felt sicker in my entire life, this arrogant young doctor heartily told me to just buck up and pull myself together. Apparently, she thought that if I simply lounged on the beach more often, I wouldn't be experiencing severe and prolonged fatigue after the slightest exertion, weak and aching muscles and joints, numbness, dizziness, unrefreshing sleep, an inability to concentrate, food allergies and a sudden weight loss of 30 pounds within three months. How much more real could an illness get?
Ten years ago, only naturopaths and other holistic practitioners seemed to acknowledge the existence of CFS, and the most effective treatments emerged from alternative medicine. However, in the 21st century, the CFS diagnosis has become increasingly acceptable within the medical establishment, and resistance to making it has been steadily declining over the years. But outside of the medical field, the attitude persists that those diagnosed with CFS aren't really ill at all.
There's also the misconception that while people diagnosed with CFS do suffer from something, it's really "just depression." It's been suggested that if CFS patients took fistfuls of antidepressants, they'd be bouncing around energetically in no time. But let's put the relationship of depression to chronic fatigue into its proper perspective. While it's true that depression is frequently a component of CFS, it usually follows - not precedes - a worsening of physical symptoms. If you were already experiencing severe limitations imposed by illness and you suddenly felt even sicker, wouldn't you feel depressed too? By the same token, depression fades away when a person with CFS experiences an improvement in her health and feels capable of doing more. The suggestion that CFS is depression in disguise is an oversimplification and erroneously denies that there's any physical basis to the illness.
Perhaps the most persistent myth about CFS is that vigorous physical exercise is actually helpful. I lost count of the number of well-meaning people who told me that I'd feel better if I started taking aerobics classes, running or cycling. After all, doesn't exercise increase vitality? This is certainly true for most healthy people, but those with CFS are already so energetically compromised that everyday exertion - even taking a 10-minute walk - can be exhausting beyond belief. Despite their high degree of exercise intolerance, CFS patients still find exercise tempting because being flooded with endorphins induces a temporary euphoria. But more often than not, those with CFS "crash" the next day and feel far worse for days or even weeks afterwards.
A downward spiral of worsening symptoms can be triggered by a single vigorous workout. Exercise should be undertaken with extreme caution, with CFS patients building up their strength only very gradually. Gentle stretching exercises such as yoga are the best place to start. Exercise tolerance can be increased bit by bit if the CFS patient does half as much as she feels capable of doing, and setbacks can be avoided by not exercising on days when she already feels drained.
Gentle, graded exercise isn't the only thing that CFS patients can do to help themselves. If you have this illness, don't impose damaging myths on yourself, particularly the myth of never getting better. On those days that you can hardly get up off the couch, you're bound to feel pretty pessimistic. But your body can recover, particularly if you support it with proper nutrition such as a gluten- and sugar-free diet that is predominantly vegetarian. Supplementation, as directed by a naturopath, is also helpful. Respect your body's limits and don't berate yourself for having limitations. Take pleasure in what you're able to do and celebrate each time your limits expand even slightly. It's important to realize that making a full recovery from CFS may take years, and even when you feel that you're back to normal, you can still experience an occasional relapse. Above all, be patient with yourself. Remember that you can - and will - get better.