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Denise Fassett and M R Gallagher, Australia, Allen & Unwin, 1998, 148 pages, £12.99
“I was no longer an academic, a runner, a skier or a traveller. Essentially I became just a head. My body was gone: I was no longer a physical being.” This is how M R Gallagher, previously a diabetes researcher and triathlete from Tasmania, begins this account of her five-year experience of illness, cowritten with friend and nursing lecturer Denise Fassett. After an asthma attack and ten days in intensive care she found she was unable to move her arms and legs, had difficulty swallowing and continuing problems breathing. Tests did not reveal a cause and as she becomes more and more disabled, M R finds herself in the “medical wilderness of the psychosomatic”. There is no cure. Five years later she remains in a nursing home, wheelchair-bound, with poor vision and generalised pain. She is surrounded by and attached to the paraphernalia of disability: a catheter, a feeding tube, and a voice-activated computer. The reader is ultimately left uncertain about whether there is a physical diagnosis. M R's experience of her illness has led her to campaign for her own and others' assisted suicide and she plans a PhD to explore the doctor-patient relationship.
At the heart of the book is M R's struggle for a physical diagnosis. Her faith in science, the hospital's apparent narrow-mindedness, her disembodiment through the experience of hospitalisation and lack of diagnosis become a potent barrier to recovery. When the doctors finally give up and she becomes a “psych consult”, her condition deteriorates dramatically. She herself, her co-author, Fassett, and perhaps some of the hospital staff, equate this label with blame, stigma and a disease that is no longer “genuine”. She is happy to receive psychotherapy and antidepressants for her depression but not to treat her physical symptoms.
Fassett is explicit in her aim as co-author to tell M R's story as an “ill person”, using narrative as a “research technology”, not to find out why she has become ill. In doing so she narrows the scope of the book but provides a rarely performed service of documenting the distressing situation in which patients with severe unexplained symptoms in a medicalised setting can find themselves. M R's inability to obtain a label to legitimise her symptoms only seems to make her more ill and angry. Doctors, nurses and other professionals emerge murkily from the narrative. They are largely distant, unsympathetic figures who are portrayed emphasising M R's objectification of her body.
At one point M R reminds us of Smyth's adage: “ask not what disease the person has but what person has the disease”. Paradoxically, this book, conceived as the story of a personal journey through illness, fails to answer this central question. Behind Fassett's insistent intellectualisation, I felt I learnt very little of M R's everyday life, her relationships, her family and her prior history. I was disappointed that the book didn't tackle some of the crucial issues. How can a person end up in such a disabled state if there is no apparent cause? Has the medical system colluded to make her ill? Would a label early in her disease have helped her to get better? Why does she think she will never get better? In M R's case, like many others, a complex mixture of organic disease, iatrogenesis, psychological, social and cultural factors are probably at work.
M R's story will be sadly familiar to anyone working in neurology, liaison psychiatry or rehabilitation medicine. She is one of the “undiagnosed”: the most severe end of the spectrum of medically unexplained symptoms that make up one third of hospital outpatients and an even greater proportion of general practice work. Patients like M R are not rare—up to ten per cent of patients in young disabled units in the UK may fall into a similar category.
Health professionals often find patients like M R difficult to help. Discussing psychosocial factors that may be important in the genesis or maintenance of illness, and the performing of tests that are negative, can alienate patients, yet a failure to do so would be negligent. This dilemma, found every day in most medical practice, reflects the poor schemata and linguistics that we have for dealing with human somatic distress.
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