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» » Living with Chronic Illness
Living with Chronic Illness


Cheri Register


Living with Chronic Illness


Medical Books

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1361 kb

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1530 kb

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Bantam (August 1, 1989)




Administration and Medicine Economics

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Living with Chronic Illness by Cheri Register

A guide to living with serious, ongoing disorders offers the personal stories of men and women who suffer, discussing coping with fear, uncertainty, and pain; child rearing; relationships; work; aspirations; self-esteem; and more. Reprint. NYT.
A helpful companion when confronted by chronic illness
Cheri Register's book "Living With Chronic Illness" was both validating and helpful to me.
Eight years of living with chronic migraines has effected my faith, self-image, independence, relationships, work aspirations and what I consider my purpose in life.
At first I tried to minimize the migraines disabling effect but over time and with more acceptance I have, for the most part, found ways to accommodate and live with them.
Register describes many of the challenges of living with chronic illness. Sickness in our culture is seen as an enemy to be fought and defeated. These war images cast chronically ill people as victims, and it's sometimes seen as a character defect if we experience suffering, grief or fear. Instead of ´┐Żbattling´┐Ż the illness we can accept it as something we live with that is our normal state of being. The realization that we can be happy and sick is a major lesson.
Our culture expects a person's disability to be a test of character or an opportunity for heroism. People effected with illness should not have to prove their value to others. We are not better or worse, no more heroic or cowardly, strong or weak than healthy people. We are people first not a disease.
Other hurdles for the chronically ill include: loss of autonomy, (self-reliance and being financially self-supporting carries the imprint of virtue). For the chronically ill not pulling your weight is compounded by the fear of becoming indigent and feeling different. Unemployment not only involves economic loss but the loss of identity, productivity, self worth and a sense of meaning. Register says it is important to separate our economic and identity issues from the quest of human worth. When we accept our illness we can stop looking for a cause to blame or a miracle cure.
Chronic Illness challenges our relationships. Adversity can bring couples closer but with chronic illness the adversity comes and goes on a regular basis. The crisis may even become the core of the relationship. Illness highlights and compounds the gender differences. Females are trained to show emotion and males to hide them. It is easier for women to "be there" for intimacy and shared vulnerability. Women often want simple consolation from their husbands, what they get instead is a rational solution. Seeing their mate sick leaves many men feeling powerless. When a relationship requires sustained expression of thoughts and feelings it may become burdensome for the mate.
Register illuminates patience as a way of life for the chronically ill. Acceptance means taking realistic control over how we live and being ready for chaos. The "one day at a time approach" helps. When pain grows intense it demands complete attention. It also helps to focus on the recovery instead of the traumas.
Most doctors are more comfortable caring for acute illness. When medications do not work the patient rather than the medication is often blamed. Few doctors are honest about the limits of medical knowledge and trust patients enough to be partners in care.
Register acknowledges that anger, fear and grief are healthy responses to physical suffering. The value of catharsis allows us to face the emotions head-on rather than avoid or dismiss them. It is reassuring to hear that having suicidal fantasies are a normal consequence of chronic illness and not evidence of losing hold. Since most people do not act on their suicidal thoughts, considering death as a way out of the pain often diffuses the suffering. Also, when we confront the suicidal fantasy head-on it looses its power. Register even came to regard her own suicidal fantasies as a treasured choice. Knowing that suicidal thoughts are a feature of the illness is empowering.
Instead of asking "why me?" the chronically ill are better served by the question "what now?" And for people of faith we might ask, "what do you want from me God?" which implies not penance but fulfillment of a mission. Instead of seeing chronic illness as a punishment for sin, an endurance test, a divine plan geared to your natural capacity or a random event Register recommends we see chronic illness and suffering as central to the human condition. It is our own share of life's condition - a way of life not an aberration. Register says, to live with passion allows us to live with the dynamics of contradiction in joy and sorrow, caring and indifference, in courage and fear, in friendship and alienation. Passion is a fully human and divine spark that burns with life.
To answer the question "what should I do?" Register says, "Just live your life, pain and all with attention and purpose." Lived fully, the experience of illness can free us from the curse of perfection. For people of faith learning to feel God's pain makes us more attuned to God's pleasure. Life is a beautiful tapestry being woven with our lives, it's pattern visible only to God.
Register redefines the disabled hero as one who demonstrates a capacity to come through multiple ordeals with their will intact. Instead of winners and losers, survivors have moments of courage, moments of cowardice, moments of determination and moments of despair, moments of glory and moments of humiliation. That many of us survive these ups and downs is a miracle that happens many times a day.
Register describes the ingredients of survival for the chronically ill: a sense of humor, tenacity, a will to live, discipline, inner strength, trusting ourselves, inner peace, acceptance, a support system, faith, skepticism, and a belief in a Higher Power and Purpose. Instead of saying, "There but for the grace of God go I" we might say, "Here, with the grace of God, I am." Our bodies are, after all, our medium for experiencing creation.
This remains one of the best books I've read with regard to chronic illness. Dr. Register describes what life is like through her own experience and multiple interviews with patients living with illnesses other than hers. It's as if she's reading the minds of the patients and their caregivers. The comments of those who fail to understand what patients go through, particularly when their illnesses are not apparent (no broken bones, no wheelchairs or crutches) have to be unbelievably frustrating. She makes one understand how patients feel when they're frequently told, "You must be feeling better. You don't look sick," The author not only talks about the day to day problems of the chronically ill, but has the reader look ahead to what the future holds. I heartily recommend this book to both patients and caregivers as a must read! After having just read this for the second time I fully realize why I've recommended it to so many people. I'm a support group leader for vasculitic diseases and a part of the Vasculitis Foundation. My daughter has suffered with Wegener's granulomatosis, a life-threatening autoimmune disease for 30 years, having been diagnosed at age 16. I've told her story in my own book, "There Must Be A Reason." Cheri Register is an inspiration to all who read the book and I salute her for having the courage to share her story along with those she interviewed which can't fail to help others regardless of their disease.
"Living With Chronic Illness" has probably been one of the most important books in my collection as I deal with chronic illness myself. I met the author in 1990 and heard her speak about the unique nature of rare and chronic diseases, and found myself nodding and smiling throughout her talk. If you are dealing with a chronic illness, you will re-read this book (or sections of it) for years as you experience different problems. Mine's marked up with yellow highlighter and underlined passages, a sign of how deeply and personally Cheri's writing touches my heart. I saw that she's revised and updated this book, so I would unhesitatingly recommend that one sight unseen too.
Register, who has a chronic illness herself, has interviewed other patients in Minnesota to get their views on subjects ranging from marriage to work. I found myself underlining so many sentences. The book has been a comfort to me since I first bought it in 1991. It has seen me through asthma and depression. One drawback, which Register acknowledges--all her interviewees are from Minnesota so there is no geographical diversity. Also, from their names and descriptions, they all seem to be African- or European-American--no Asians for example, and I didn't find any gay people. A more diverse sample would have made this a stronger book. Overall, I highly recommend it, and I hope she's still around to publish more! I really appreciated her sharing so much about her life.

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