Introduction

Preface

Leigh Hatcher

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Many thousands, perhaps millions, around the world suffer silently with chronic fatigue syndrome. They suffer terribly from the illness itself—there is much physical pain. They also suffer great loss, forced to endure shattered hopes, plans and relationships.
Most of the time, though, they will tell you that the worst suffering, beyond all the physical hurt, comes from widespread misunderstanding of the illness and from the suspicion people have about its reality and therefore about the validity of the sufferer.

Those of us with chronic fatigue syndrome—or CFS as it is often known—hate the fact that it’s ‘just’ a syndrome. Too often it is written off as being ‘all in the mind’ or ‘just being tired’. Sometimes it’s even judged to be a kind of lifestyle choice. If only it were that simple! CFS sufferers try to find other names for the illness, other categories, but in the end it remains ‘just’ a syndrome. Yet so is SIDS (Sudden Infant Death Syndrome), and so is SARS (Severe Acute Respiratory Syndrome). No one misunderstands either the tangible reality and validity of those syndromes or their devastating consequences.

In the end, CFS sufferers can seldom win out over all the misunderstandings and misguided judgments. They are forced into retreat and often into deep hurt. They are just too ill to keep beating their heads against a brick wall. They are driven into silence, resentment, anger and sometimes depression.
All of this drives my passionate hope for this book—that in some small way it can give CFS sufferers both a voice and validity. I want to show them that they are not alone in their struggles. If my story is able to contribute anything, I hope it can be a voice of acceptance and comfort—a voice of someone who knows the reality of this illness and can communicate that reality on behalf of those whose own voices have been crushed or humiliated into silence by too many suspicions and misjudgments.

I also want to provide CFS sufferers with a resource they can pass on to doubting or puzzled family, friends, neighbours and work colleagues. All these people need to know that the suffering of CFS is more than enough on its own without other people’s unsympathetic scepticism. This book is a voice urging acceptance and love, probably over the long haul. It is a voice that rages against the simplistic notion that CFS is ‘all in the mind’, a cop-out from life or, worst of all, a fraud.

I have two primary desires for the book. First, I want it to be of help to anyone battling CFS—or indeed, any kind of serious, long-term illness or upheaval. I confess to being a pragmatist. My aim is to provide practical insights through real-life experiences that can help make the long haul bearable.
For family and friends of those doing it tough, I offer practical suggestions, often born out of much pain and hurt, about how they can best be alongside those who suffer.

Second, I want to point to the fact that though CFS has been truly a ‘wilderness experience’ for me, it has never been totally dark—never without hope. Primarily, this hope has come from the way I have been resourced, encouraged and uplifted by an unshakeable faith in God. This part of my experience will not be shared by everyone who has CFS, but for me it is simply impossible to leave it out and still write a true account of all I have been through.

My journey through CFS raises honest questions, not only about why we suffer, but also about how there can be help and hope, even meaning, in the darkest days. It is a reporter’s story written in the style I know best, a factual narrative based on 500,000 words of diaries I recorded through my illness. I hope you find it an honest, accessible and authentic read.
Of course, no two CFS stories will ever be the same. I don’t imagine that my story or my way out of this illness is typical. There is no typical story. However, the syndrome is very real—and if my story can affirm, empower and encourage other sufferers, it will be worth the battles I have been through with this terrible illness.

Leigh Hatcher