I can remember well, early in my illness, perhaps even before diagnosis, telling my doctor that I was “Sick and Tired of feeling Sick and Tired.” It communicated so much, not only about how I was feeling, but about how frustrated I was with feeling that way.
I have recently had the pleasure of reading a book by Paul J. Donoghue, Ph.D., and Mary E. Siegel, Ph.D., titled Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. The authors are psychologists in private practice, and have for a number of years worked with individuals with Invisible Chronic Illness (ICI) and those who care for them.
Before anyone says “Oh, no, another IAIYH book,” I want to reassure you that is not the case. The authors talk about the experience of ICI, for the sufferers, and their caregivers. They understand the feelings of their readers and teach attitude [adjusting] and communication skills as one of the major forces in learning to live your life with disease. Although this book is not specific to CFIDS/FM, the lessons it has to impart are very relevant.
In the introduction to this new edition, the writers outline “certain themes related to invisible chronic illness (that) have surfaced over and over in our conversational question-and-answer sessions following our lectures. We want to reflect briefly in this introduction on four of these themes:
*Guilt: Feeling bad for being ill
*A family challenge: Responding to illness as it affects the entire family
*Acceptance: Facing and coping with illness versus giving up
*Meaningfulness: Finding meaning in suffering”
“Guilt is not easy to combat.” The authors state that readers find their chapters on rational thinking helpful in the fight with what is irrational guilt. “‘The truth will set you free,’ and irrational inner language suggesting responsibilities that are beyond your control are lies. They need to be replaced with honest, truthful thoughts that free you to have peace.”
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In the section on families, the writers say that they have had many opportunities to witness both the loving attention of spouses and families, and those who don’t listen, and blame the individual with ICI for all the challenges facing the family. “Illness brings out the best in families, or highlights the worst. It forces profound growth or it splits marriages and families. What it does not do is leave a family untouched.”
To many patients and families, acceptance means giving up. But the authors feel that true acceptance is “essential to being peaceful and to coping creatively.” Acceptance “means having the courage to admit at times that you can’t do it, whatever it is, and the courage to say no.” Later in the book, as the chapters expand on these points, the authors make the point “If you suffer from ICI you need to learn to discriminate what you can control about your illness and about yourself and what you can’t…” But you “can control yourself in more and more mature ways. You can increase control over your thoughts, disciplining your mind to focus on the present.”
“The ill themselves frequently attribute their illness to their own inadequacies. They believe their illness is due to a lack of moral strength or proper attitude…The search for meaning, therefore, must begin with a recognition that suffering is not some human aberration visited only on those individuals who are less [fortunate] than the rest of us…The truth is that suffering is a part of life…Suffering is inevitable. It is how you find meaning in it that prompts your growth and generates hope, peace, even wisdom.”
I found this book to be a thoughtful examination of the upheaval all of us go through, in learning about our disease, seeking care, and understanding how to live with it day to day. The book gives examples, ideas, scripts, to help us get past the physical symptoms and the frustration we experience. It gives suggestions to help others in our lives to gain peace about the disease and explores how it affects us and our families.
This book is not a guideline for physical care, although it does touch on relationships with doctors. It is a model for emotional/psychological care, for ourselves as sufferers of ICI, and for those we love and who love us. It teaches us communication and listening skills that are necessary to find our way through the maze of our own feelings and agendas, as well as those of the people with whom we interact.
The authors say in the last paragraph of the introduction, “these last seven years of sharing in the concerns and struggles of so many good people has deepened our belief that we can learn and grow through suffering. If we can accept it, suffering will push us to seek new knowledge and skill and stretch us to deepen our capacity to share love and to be more grateful for our lives. We hope all who pick up this book will be encouraged to make choices that harness the potential hidden within the suffering and challenges presented by invisible chronic illness.”
I would like to thank Paul and Mary for the opportunity to read this book and to share what I learned with you. In their last paragraph, they say “Trust yourself, listen to your feelings and needs, grow to understand those around you. Your illness is a daily trial, but in learning to live with it, you can come to know yourself and live a full, wise and courageous life.” This book gives you the tools you need. Take care and be well.
Yours in health,
Book information: Donoghue, Paul J., Ph.D. and Siegel, Mary E., Ph.D., Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness, W. W. Norton & Company, Inc., 500 Fifth Avenue, New York, N.Y. 10110, www.wwnorton.com, New Edition, 2000.
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some information about your disease. It is very important that you empower
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advice given is not intended to take the place of advice of your physician
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if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.