Customer Reviews

Surviving Your Spouse's Chronic Illness

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Part of my job is to review and recommend books in the chronic illness category. I borrowed this from the library, with hope, for this subject is not much written on (as distinct from "caregiving" in general.) It is certainly a complete, and fully accepting, description of a desperate situation (from the author's own experience, and those of others that she interviewed.) Don't look to this book for instructions on how to give a bed bath, it is not that kind. Look to it for an honest approach, without the "plaster saint" image, to feelings and stressful emotions. (The opening words, spoken by the author to her understanding parents are, "I wish he would die.") HOWEVER - no matter how much this book is to be honored for its completeness and honesty, there is a warning: Not everyone will accept her solution to her husband's impotence: She took a lover, with her husband's tacit approval, "As long as I don't know about it." If you can't accept this kind of thing, give this book a miss.

Excellent guide for spouses coping with the chronic illness of their wife or husband. Written in an informed and sensitive manner, this book is sure to be a "godsend" to anyone coping with a new diagnoses of a spouse.

A wonderfully frank, caring work that deals with the reality of being the well spouse with a chronically ill partner. Addressing the issues of denial, anger, sex, and money, among others, the author shares her own experiences, and those of numerious other couples in coping with the emotional trauma of a partner's long term illness. The information should relieve lots of guilt, and give well spouses a "first aid kit" of devices to aid their own well-being.

This book is wonderful. It helped me so much to know that the feelings that I have are completely normal to the well spouse of a chronically ill patient. From the anger and resentment to the wonderful feelings of love it is all explained here for us.

I have finally found someone who truly understands what I am going through every day. This book presented the REAL- yes the well spouse has anger and feels isolated and desires sex! This book has been a God-send for me! I am so glad that I found it and I recommend it to anyone who finds him or herself in my unfortunate situation.

In this beautifully written book Dr. McGonigle tells in readily understandable language what it means to care for someone you love over an extended period. She has not only written from personal experience but draws on the experiences of others in the same situation, information gathered from extensive interviews and research. This book will interest those even remotely involved in this situation but will be an invaluable source of reinforcement for those unfortunate individuals caught up in this sad circumstance.

My wife Aisha and I read this book together, and we found it didn't reflect our experience at all. I've had MS for 30 years, and it has been rough for both of us, but there has always been hope. There have always been positives and even areas of growth for us. I wrote a book about it called Art of Getting Well, available on Amazon.

But the people in Chris McGonigle's book are much worse off. They go downhill fast; they wind up in nursing homes or dead. I'm sure this reflects her experience, but it presents a distorted picture. Most people with chronic illness can live pretty good lives. Partners do suffer, but there are ways of reducing the suffering.

Many of the people she writes about don't have chronic illness at all. They have had injuries that left them paralyzed or brain damaged. And in every story, she seems to find the perfect fact or anecdote to make the situation even bleaker than it is.

McGonigle says that when her husband was diagnosed with MS, there were no books or support for her. She is so right that partners don't get support. Aisha and I have been doing workshops and classes on sex and intimacy for couples with chronic illness, and we find that partners almost never get a chance to talk about or read about their situation.

She says there were books on "caregiving," but none on "living" with a chronically ill spouse. She set out to write that book for partners, but she wound up with another caregiving book, minus the practical suggestions. The book on having a good life for couples with a chronic illness still needs to be written. Aisha and I are working on that - if you have a story or ideas to contribute, contact me at davidsperorndotcom.

One thing I want to give Chris credit for is writing honestly about starting a relationship with another man while her husband was spending years in a nursing home. It angers me that well partners get criticism for meeting their own needs while caring for a very sick person. In fact, finding some pleasure in life often enables well spouses to keep caring for their partners. Because of our culture's sick (IMO) elevation of monogamy to a moral absolute, spouses have to go through all kinds of grief to have some love in their lives.

So that's a big plus for this book. There are others. But the grim quality of life of the people described in this book will bring you down or scare you off, if your situation is not so dire. It is about "surviving," but not about really living with a chronic illness.

This book starts out with great ideas and empathy for the "well" spouse, giving them a sense of support and understanding. Yet, it suggest the well spouse have an affair to curb their sexual needs. I find this deplorable!

I am chronically ill and the thought of my husband having sex with another woman makes me sick. I don't care that the author claims her ill husband sort of consented to it. He said he did not want to know about it if she did. Obviously, it was not really okay with him.

What happened to "for better or worse" or "in sickness and in health?" Marriage is about a commitment, not about selfish urges. Besides, there are many other ways to be fulfilled sexually within marraige, other than intercourse, if this is not possible for the couple. Illness and impotence are not an excuse or justifiable reason for an affair.

I suggested a friend read this book as that friend is dealing with a spouse who is chronically ill. I also read it as I had to deal with a son who had MS. I was especially interested in the comment "the MS is in denial" as no matter how hard I fought for help from the MS society - I received nothing - and never in any of the reading material I found did it say that one could die from MS within months. It was always "years". My son's death in less than 15 months was devestating, I couldn't believe it. To this day I have never been able to find anyone who experienced the same horrible fate in such a short amount of time.

The spouses of the chronically ill often suffer in little-known and terrible ways. Few resources are available to help them. This ought not be. But this book, despite its promising title, will not provided desperately needed help for those who attempt to minister to their chronically ill spouses.

The reason is simple. The most important reality for handling chronic illness is ongoing love and commitment, despite the pain, frustration, and anger. In chapter three, Mrs. McGonigle condones adultery when the well partner has had enough and needs to have her or his sexual and emotional "needs" met by another man or woman. She even admits to committing adultery herself-during a one-year "affair"-and justifies this in self-deceptive ways. Her husband supposedly tacitly allowed for it. She even claims that this betrayal ended up strengthening her relationship to him. That is utter garbage.

The wedding vows do not allow for that serve-serving and sinful path of destruction. Yes, living with the chronically ill is hell. One often does not know how cope. Nevertheless, the path of virtue demands faithfulness. Would Mrs. McGonigle have allowed for her husband to commit adultery if she had been the one with a chronic illness? If so, the debauchery only intensifies. For a more faithful response to chronic illness, read "Beyond Chaos" by Greg Phiburn.