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Chronic Fatigue Syndrome, Christianity, and Culture: Between God and Illness

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This short and insightful reflection is unique and uniquely needed in at least two ways. First, it is a near-miracle that the book exists at all, given the fact that the author was struck down with chronic fatigue syndrome (or CFIDS, chronic fatigue immune dysfunction syndrome) several years before writing it. Those familiar with this cruel disorder know that mere survival presents a challenge to its sufferers. The rigors of writing a book elude most healthy people. Second, the subject matter is (to my knowledge) unique. There are many books on treating chronic fatigue and coping with chronic fatigue and there are a few books that attempt to help loved ones understand this disorder in order to provide intelligent and caring assistance. However, this is the first book to put the experience of chronic fatigue into a larger cultural and theological framework.

There are also numerous books on the problem of evil (of a philosophical and theological bent) and books on the vicissitudes of suffering through evil (of a pastoral and psychological bent). But these efforts nearly always ignore a category of evil and suffering that afflicts millions of people: chronic illness. Those in the vice grip of chronic illness-whether chronic fatigue, lupus, MS, irritable bowel syndrome, or other disabilities-must often endure a double malady. They not only lose their health, their dreams, and any semblance of normal life; they also end up becoming opaque mysteries even to those closest to them. This phenomenon lies in the nature of those chronic illnesses that are "invisible" to the uncaring eye. An invisible illness is one that is real, but not easily detectable visibly. Many who endure the life sentence of chronic illness "look fine" but feel miserable-more disconsolate than can be imagined by the those not stricken. Many unsympathetic friends and relatives put pressure on the sufferers to "buck up" or "stop feeling sorry for themselves" and "just get on with life." After all, they are not in a wheel chair, they can see and hear, they have all their limbs, and they don't have cancer.
So, what, exactly, is their problem?

James Rotholz writes from a place of understanding and wisdom. Trained as an anthropologist, he knows the dynamics of cultural values. As a Christian, he knows that pain and suffering are part of a universe that groans in travail awaiting its final freedom. He further knows that in Christ there is hope and meaning for even the most debilitated human being. As a chronic fatigue victim, he knows the fear, disappointment, anger, and frustration of this dark fate. After his wife fell ill with chronic fatigue, this young professor succumbed as well. (His wife eventually improved.) He was forced to leave the academy, yet try to provide for his family and carve out a meaningful existence in spite of it all. Rotholz tells his story without lapsing into either self-pity or pious platitudes. Those not touched by chronic illness need to listen to his tale-especially pastors and caregivers. Rotholz grants that many believers and non-believers have suffered nobly. Nevertheless, chronic illness is a bitter pill that must be swallowed again and again.
Rotholz's first-person narrative unveils a world of which most people know nothing. It is a world about which many would rather remain oblivious. His account is not a diversion from the unpleasant, but an immersion into the unspeakable. Those who are ignorant-willfully or otherwise-of the sufferings of others are exempting themselves from part of the human condition. In avoiding knowledge of the experience of pain, such people cheapen their own relatively painless lives.

After two chapters explaining his descent into the illness and his coming to terms with it, Rotholz utilizes his anthropological background to reflect on the larger questions of how American culture responds to and evaluates chronic illness. He explores the American "culture of success" and how it marginalizes the disabled, who cannot perform economically or culturally in the ways deemed worthy.

But Rotholz is not content merely to level accusations at American insensitivity, however needful this is. The remaining chapters present an alternative understanding of worth and meaning before God. Instead of emphasizing material achievement, the Bible calls us to value character and faithfulness. Instead of valorizing the wealthy, the beautiful, and the influential, God calls us to value all people-no matter how lowly-because they bear the image of their Creator. Our ultimate achievements are not quantifiable, but are matters of qualities-qualities of the soul as it rests in and gives glory to God, come what may.
Rotholz wrestles with some of the deeper philosophical and theological problems in the concluding chapter, "Called to Dignity." Rotholz finds meaning through his suffering in the wise providence of a sometimes mysterious God. As he notes in the previous chapter, "A New Vision of Success," naturalism offers exactly no meaning or explanation for human suffering. "Any view of human life that is devoid of God must ultimately be dehumanizing, for it means that human life has no real purpose, thus, it is meaningless. Suicide would then become a reasonable response" (101).

"Chronic Fatigue Syndrome, Christianity, and Culture" is not a feel-good, self-help manual. It doesn't tell you how to be "successful" in a worldly way (or how to be successful in a worldly way while pretending to be spiritual). It is not a "success story" as our culture defines it. The author is not a celebrity. Instead, this book tackles a subject most people would rather ignore or forget. But never mind that. By composing a contemplative book on a neglected topic, James Rotholz has won a moral and spiritual victory. His readers will find a story that ends not in despair, but in hope. This is a book for all those who want to honor and minister to a largely forgotten subsection of "the least of these, my brethren"-the chronically ill.

Douglas Groothuis

This is not really a book about CFS. As a firsthand account of the illness, it contains relatively few details about the treatments the author tried, tests that were performed, who diagnosed him and how, the pattern of his symptoms, and progression of his illness. This is important information, not just because it validates the experience of other people with CFS, but because CFS memoirs are, in essence, case studies. Detailed memoirs provide patients and doctors alike with valuable information about the course of the illness, effects that different medications have on specific symptoms, and so forth. In that sense this book was a double failure, because Rotholz had the opportunity to describe not only his own experience, but that of his wife, who came down with CFS five years earlier. It would have been useful to know how their illnesses differed, if any treatments helped her, how her doctor came up with the diagnosis and which exclusionary tests were performed. But Rotholz glosses over his wife's illness as if it were somehow not pertinent.

Instead of focusing on CFS, Rotholz uses this book as an opportunity to air his thoughts about culture and religion. Unfortunately, Rotholz is not an original thinker on either topic. A critical exploration of our cultural beliefs about illness might have been fascinating, but what Rotholz offers up is nothing more than tired old saws and some rather mundane criticisms of our notions of success, capitalism (qualified by a hearty: "I'm not advocating socialism"!), wealth and power, and, of course, a suggestion for a "new" name--not for CFS, which is absolutely essential if this illness is ever to be taken seriously--but for "disabled" ("differently abled" is the term he recommends).

Rotholz's forays into anthropology (Bushmen of the Kalahari, Bruderhof Society) were no better. In both cases, vague generalizations (based on other people's fieldwork) were all Rotholz could muster. In a book about CFS, wouldn't it have been more valuable to point out those cultural differences which directly relate to illness? For example, among the Maya, the concept of "malingering" is entirely unknown. There is literally no such thing as an "all in your head" illness: if you feel ill, you are ill. It would have far more interesting to contrast their experience of illness with our own, rather than delve into the Bushmen's concept of success.

As for Christianity, Rotholz reinvents the wheel. "There is no higher goal in life than to live out the Christian ideal" is a sentiment that he expresses for nearly half of this book. This sentiment has been expressed before, and no doubt will find its way into print again. The question is, why did Haworth MEDICAL Press publish it?