Work and unseen chronic illness

Margaret Vickers Routledge, London, England, 2001 ISBN 0 415 24347 5, price £55

Margaret Vickers's research is on how people live with chronic illness, and how they deal with the mistreatment such illness incurs at the workplace. As an academic with multiple sclerosis (MS), she has firsthand knowledge of this subject, and makes effective use of it. She also uses the experience of her husband, who is suffering from sarcoidosis, and of how their illnesses affect their relationship.

Her main research material, however, is the texts of extended one-to-one interviews she conducts with 10 informants, aged between 25 and 54. All of them have jobs (in or around Sydney), ranging from senior executive to junior assistant positions, and all of them are suffering from incurable illnesses that are not immediately or constantly visible. These conditions include MS, leukemia, glaucoma, spondylolisthesis, breast cancer, endometriosis, chronic fatigue syndrome (CFS, or myalgic encephalomyelitis, ME), lipodystrophy, and lung cancer. The complete list is longer because although some of the informants have the same illness (two have endometriosis, and two have MS), some have several simultaneously.

In addition to an analysis and discussion of the transcripts, there is an extensive literature review, and a detailed account of how the methods were chosen, the informants found and enlisted, and the work carried out. These elements provide a robust theoretical model within which the researcher's own experience and that of the informants, as well the ways in which they interact, are shown to be inseparable parts of the study as a whole. The material from the informants and the literature is supplemented with extracts from the author's diary.

The data converge on four main points: the trauma of discovering one has an incurable illness, and how this gradually turns "from crisis to chronicity"; the fringe-dweller status which chronic illness seems invariably to bring with it, whether in employment or out of it; worries about being able to do and keep one's job in a managerialist environment; and surviving.

The diagnosis marks an important point in the journey, but not the start of it, which occurs with the first awareness of the symptoms, in some cases a long time before the illness is officially labelled. Fred, after nine months of visits to doctors and specialists about a pain in his arm, is told one day in October that it's lung cancer and he probably "won't see Christmas". Daphne experiences loss of peripheral vision, aching, fatigue, ataxia and other gradually more persistent symptoms for seven years before being diagnosed with MS. Her response, paradoxically, was one of relief, at least initially: "It's good to know exactly what it is so you can deal with it," she says. Linda says "In May 1994 I was having a shower and I felt a lump under my nipple." She puts off going to the doctor, hoping it is a harmless cyst, but eventually she goes, is sent for a mammogram, then for a biopsy, and learns: "it was pretty serious ... so they couldn't actually just take a lumpectomy, they couldn't just take a lump out. They actually had to remove the whole breast." All this took a week.

Although it is hard to think of anything more daunting than one's own depletion and death, this discovery is only the beginning. The literature and experience alike indicate that "those who have the greatest need for social support are, frequently, the least likely to get it". Shelley, who has leukemia, remembers receiving loads of flowers and "cakes and all that kind of stuff" in hospital, but, returning to work, far from receiving emotional support, she actually loses friends because of inability or unwillingness to face another's suffering and death. Either she is assumed to be well because she looks well, and so her weaknesses are treated with indifference or impatience, or, to those who know that she is seriously ill, she is a source of discomfort and avoided.

Linda, returning to work after her mastectomy, is told by her manager: "Your job no longer exists."

"Do you realize that what I've got is a life-threatening disease?" she asks.

"Yes, but I didn't really factor that in when I was thinking of what to do with you," he says.

Much of the material focuses on this kind of exchange, which can be as devastating as the diagnosis itself, given its cruelty and its potentially disastrous financial and social implications. A stunning display of ignorance on the manager's part, we may say, but at the same time a perplexing one, because in these examples the manager functions in the way managerialism encourages us all to. Efficiency, the budget and the organization are what matter, it asserts. If human beings are acknowledged to matter too, it is because they are resources, the shrewdest investment, at least the healthy ones, or those whose diseases are curable. Not surprisingly, depression rates soar in societies where this understanding of life and work takes hold.

"Inhumanism" is not what successful mainstream workers and managers would usually claim to believe in, but it is perhaps the most accurate name for a set of values which systematically makes a virtue out of brutality and replaces human understanding with crude calculations (or, as is often the case, sophisticated ones). Productivity itself is revealed as a dubious rationale in this context. Surely work is valuable first and foremost as a means of living humanly.

Having braced ourselves for unmitigated gloom, however, and read about kinds of distress which are commonly considered unthinkable, we are left somehow convinced, perhaps more deeply than before, of the value of life. This is partly conveyed, though not explained, by diary extracts such as the following:

"As I write this, however, the first concentrated effort I have managed since entering the hospital five days ago, I can feel my toes, intermittently, for the first time in six months. I feel an irrepressible and ridiculous sense of optimism" (italics in the original). The hope nurtured here is not the false one that our illness and death can be ignored or postponed for ever; two of the informants die before the study is completed. It is that the blindness of instrumental thinking — which is the unseen chronic illness of the workplace itself — is perhaps not incurable after all.

Desmond Avery²

² Editorials/Reviews Editor, Bulletin.