Women, Body, Illness

One clue about the quality of a book is that moment when you've turned the last page, closed the back cover, and you sense its aftertaste. With this one, I felt I had had a deep, far-reaching, "round" conversation about a very personal, often hidden-from-public-view topic. A scholarly and at the same time intimate exchange between the accounts of chronically ill women on the one hand and my own close encounters with and observations and understanding of chronic illness, impairment and health challenge on the other. In that combination of scholarship and intimacy, this is a surprising book, a welcome and a needed book.

Building on years of separate and joint research on women, chronic illness, and identity making of their own as well as on that of others, Moss and Dyck's new book falls not on terra incognita. It does, however, push out the boundaries of theory and research practice in this topical area to a fresh and interesting new frontier. In doing so, the authors develop the conceptual building blocks for a radical body politics, which aims to view chronically ill women not as victims, but as continually active creators of their lives under volatile, unpredictable conditions. Weaving together theory and the personal accounts of 49 Canadians, the resulting impression is that of a well-grounded, solid, critical empirical analysis, and maybe more importantly, a very "real" depiction of the actual lives of chronically ill women.

Women, Body, Illness is a relatively slim, if significant compendium, maybe not least for the fact that one of the authors herself lives with a chronic illness (Chronic Fatigue Syndrom or Myalgic Encephalomyelitis (ME)). In the first five of ten chapters, they stake out the theoretical, conceptual and empirical spaces in which chronically ill women configure their lives. In the next four chapters, Moss and Dyck let the research subjects speak mostly for themselves -- the most successful and engaging chapters of the book, not only informing the theoretical framework but also "lightening it up" -- infusing oxygen into the dense beginning.

In each of these empirical chapters, the emphasis is on a different aspect of living a life with chronic illness (Rheumatoid Arthritis and Chronic Fatigue Syndrom are the primary foci). Chapter 6 addresses the process of destabilizing the material body associated with the onset, diagnosis, and discursive exploration, naming and taking-on (inscription) of the illness. Chapter 7 tackles how the ill body and its immediate environment is redefined and reshaped materially and discursively. Chapter 8 broadens the analysis out to the recreation of women's identity as chronically ill women as they engage and negotiate their physical and social environment and its boundaries. Finally, Chapter 9 goes yet a step further by describing how women not only rethink themselves and remake their lives but also reshape their environments in order to make sense of the (new) condition. All of these processes of naming, redefining, reconfiguring, reconnecting and remaking are embedded in women's social relations (relations of power with real material implications). The concluding chapter 10 briefly ties the empirical and theoretical strands back together, leaving no loose ends untied.

Overall, I appreciated the down-to-Earth "realness" of how the lives and strategies of chronically ill women are depicted. The ambiguities, the losses, frustrations and courageous attempts at sense-making and resistance that chronically ill women deal with on a daily basis were captured in a convincing way; the specificity, the reprioritization of mundane and special tasks and events, and the emphatic denial of "typicality" when every day is different from the next resonated with my experience. But what I was missing -- especially in something claiming a radical approach -- was a more insistent questioning of why women -- especially women -- become affected by chronic illness. Of course, that topic is huge and complex, but affected women ask themselves that question all the time, and I simply found the study too "thin" in this respect, not radical enough in the analysis of the environment-health relationship.

A second critical remark extends the one above by thinking about the "so what?" question while considering potential audiences for this book. Of course, there are the relatively simple categories of (healthy) scholars of Women's Studies, feminist geographers of health/illness, and other social theorists -- especially within geography -- concerned with body, identity, and how the environment/locality/place affect and is affected by the internal states and outer actions of people. But for a book on this subject matter, so well depicting the challenges, transitions, and variably effective strategies of chronically ill women, the potential readership should extend to the realm of praxis: health care providers in private and public settings, friends, family members and supporters of chronically ill persons, even insurance providers and health policy professionals. For that audience, if they can tolerate the dense jargon early on, there is much here to learn and understand about what it means to have RA or ME. But if they were hoping for some pointers on how to alleviate the challenges of chronically ill women, there is no advice here: nothing on the need for public education and awareness-raising among health care professionals; nothing on improvements in health and insurance policy; nothing (other than examples) to guide employers. I always thought (or hoped) a radical politics means more than rewriting theory. And while scholarly activism takes many forms (and Moss and Dyck have their own versions), I was disappointed to find so little on "what to do." Thus I strongly encourage the authors to broaden their analysis to make the sample more representative and thus lay the groundwork for practical changes to help ease the lives of chronically ill women.

Finally, of course, I would like to recommend the book to those affected by a chronic illness, to send -- if nothing else -- the message of "you're not alone."  Except, I don't know of one who could get past Chapter 1, given how most frequently suffer from extreme fatigue, lack of energy and ability to concentrate or comprehend complex, dense material -- precisely the conditions Moss and Dyck so well describe. To that audience I say, wait for one of your "good days" and go straight to chapters 6-9. The beginnings reiterate the basics of the theoretical framework if you're really into it, but mostly: pick through the other women's stories -- as you are able -- and yes, even leaf through the footnotes -- there is the occasional really useful support information and a great reserve of further references. There are people -- like Pamela Moss and Isabel Dyck -- who "get" what you're going through.

© 2003 Susanne C. Moser

Susanne C. Moser, Ph.D., Environmental and Societal Impacts Group, National Center for Atmospheric Research, Boulder, CO.