Surviving Your Spouse's Chronic Illness
by Chris McGonigle, Ph.D.

Published 1999 - Available at Amazon.com for $10 or less from individual sellers - out of print   (see link below)

Reviewed by DeanOP
MSWorld Book Reviewer

Woof! What an incredibly powerful book Dr. McGonigle has written. I have just finished it and I feel very moved and shaken by what I've read. I am not a well spouse, nor do I have one. Therefore my opinions must be considered in the light of my being a chronically "ill" person.

I would highly recommend this book because it is so very honest. It addresses feelings and realities I have not often seen addressed in books about (particularly) MS, that being the disease from which Dr. McGonigle's husband suffered (he is now deceased). Anger, abusive and abused feelings, spirituality, intimacy, staying or leaving, handling the loss of one's expectations, nurturing oneself and raising the children, are among the many topics covered. In the book many different well spouses speak of their experiences in these and other areas, so one is not receiving solely Dr. McGonigle's opinion. A great strength of this book, therefore, is that it offers a spectrum of responses to caring for a chronically ill spouse, emphasizing that there really are many, many ways with no "right" or "wrong".

It was difficult for me to read some of the described feelings caregivers may have when I, myself, might be the object or catalyst for those feelings in my own relationships with caregivers. But people with MS and their caregivers are no strangers to difficulty, and I imagine that this book could provide fertile ground for conversation between partners, deepening communication and improving understanding.

It might also be a terrifying book for some. In it MS is seen as a potentially life-threatening or life-curtailing disease. As a person with MS, I had not thought that to be the case; had assumed my life would be as long as any normal person's. And it may. But it may not, and those who are not open to that possibility may find this book overly pessimistic.

Because her own husband died of complications due to MS, Dr. McGonigle does not spend much time on those whose partners may, in fact, outlive them. It is really a book for caregiving spouses, and once the increasingly debilitated partner has been placed in a nursing home, the book goes on to discuss options for the well spouse. Again, as a person with Ms it was hard to read, and think, about the reality of that possibility. Sick or well, we all occupy center stage in our own lives, yet here was a book wherein the characters I most identified with were sort of out of the picture (in a nursing home, or dead) while the book continued, appropriately, to offer support for the spouse NOT in a nursing home or dead. That is, however, a reality that needs to be addressed and Surviving Your Spouse's Chronic Illness does that unflinchingly.

The book had some shortcomings (in my opinion... and what book doesn't, after all). One such was the lack of anything other than heterosexual, formally married partners. There were no gays, no lesbians, no people "shacked up", yet less conventional couples also face the consequences of devastating illness, often with fewer resources in terms of community support and health benefits than more conventionally married ones. Another was a faintly Christian bias, particularly in the section on spirituality. There was one identified Jewish spouse interviewed. The rest were Christians of one denomination or another. There were no other spiritual pathways described. Those may seem like "picky" points to make, and they ought to deter no one from reading this book, but be forewarned that if you are not Christian or heterosexual you may feel alienated, left out of the loop and overlooked yet again. Another area I felt was given short shrift is that of spouses who decide NOT to stay in the partnership.

Although there is a chapter about "the parting of the ways" it is about nursing home placement as much as it is about divorce. The statement is made that, statistically, the majority of well spouses, for whatever reasons, do remain committed to the diseased spouse, and the book spends much more time on these, the committed, than on those who have been unable to do that.

Taken as a whole, though, I felt this to be an excellent, compelling and demanding book. I couldn't put it down, though at times I had to in order to process what I'd been reading. It has made me more aware of my mortality. It has confronted me (again) with the fact of others' lives either going on or needing to go on without the chronically ill person (me) necessarily being there. Dr. McGonigle's book opens the door to an awareness of the myriad ways people have found to cope with devastation, the humble courage of simply, sometimes unwillingly, putting one foot in front of the other on a road that keeps getting worse. She doesn't gloss or glorify either the chronically ill or their caregivers. I found this to be, though hard for a person with MS to take, a very compassionate book.

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