I always begin my “Medicine and Society” seminar by asking the students to identify as many of the following terms as they can and then to tell me what they have in common: nostalgie; railway spine; soldier’s heart (aka effort syndrome or Da Costa’s syndrome); puerperal insanity; neurasthenia; hyperkinetic syndrome; irritable bowel syndrome; ADHD; chronic fatigue syndrome; and fibromyalgia.
The answer, of course, is that they are not diseases at all but broadly descriptive syndromes based on self-reports. In each and every case, physicians listen to what patients (or, in the case of children, parents or teachers) tell them, and then give a diseaselike name to a cluster of symptoms for which there is no apparent biomedical explanation.
The fact that such conditions have existed throughout history and the appreciable symptomatic overlap among them surprise some students but not others. I like to point out especially the virtual mapping of neurasthenia, a syndrome “identified” by the pioneer American neurologist George Beard in 1869, on to contemporary notions of chronic fatigue syndrome and fibromyalgia. For Beard the symptoms of neurasthenia include mental and physical fatigue, insomnia, headache, general muscular achiness, irritability, and inability to concentrate. What have we here if not the symptoms of chronic fatigue syndrome and fibromyalgia, with the only difference, really, residing in the biomedically elusive cause of the symptoms. Whereas neurasthenia was attributed by Beard and other nineteenth-century neurologists to nervous weakness, i.e., “debility of the nerves,” the contemporary variants are ascribed to a heretofore undetected low-grade virus.
The same mapping chain applies to stomach and digestive discomfort. Long before the arrival of “irritable bowel syndrome,” for which there has never been a basis for differential diagnosis, there were terms like enteralgia, adult colic, and that wonderfully versatile eighteenth- and nineteenth-century medical-cum-literary condition, dyspepsia. Before children were “diagnosed” with ADHD, they were given the diagnosis ADD (attention deficit disorder) or MBD (minimal brain dysfunction), and before that, beginning in the early 1960s, the same kids were diagnosed with hyperactivity (hyperkinetic syndrome). Military medicine has its own chronology of syndromal particulars. Major building blocks that lead to our understanding of combat-related stress and its sequelae include PTSD, during America’s war in Vietnam; combat fatigue and war neurosis during WWII; shell shock and “soldier’s heart” during WWI; and nostalgie during the Napoleonic Wars and American Civil War.
The functionality of neurasthenia and its modern descendants is that they are symptomatically all-inclusive but infinitely plastic in individual expression. It is still a blast to read Beard’s dizzying catalog of the symptoms of neurasthenia in the preface to Modern American Nervousness (1881). Here is a small sampling:
Insomnia; flushing; drowsiness; bad dreams; cerebral irritation; dilated pupils; pain, pressure, and heaviness in the head; changes in the expression of the eye; asthenopia [eye strain]; noises in the ears; atonic voice; mental irritability; tenderness of the teeth and gums; abnormal dryness of the skin, joints, and mucous membranes; sweating hands and feet with redness; cold hands and feet; pain in the feet; local spasms of muscles; difficulty swallowing; convulsive movements; cramps; a feeling of profound exhaustion; fear of lightning; fear of responsibility; fear of open places or closed places; fear of society; fear of being alone; fear of fears; fear of contamination; fear of everything.
This same model, if less extravagant in reach, pertains to chronic fatigue syndrome and fibromyalgia. Any number of symptoms point to these conditions, but no single clustering of symptoms is essential to the diagnosis or able to rule it out. In the world of global syndromes, the presence and absence of specific symptoms serve equally well as diagnostic markers.
As many historians have pointed out, the development and marketing of new drugs plays a significant role in the labeling (and hence medicalizing) of these syndromes. From time immemorial, young children, especially boys, have had a hard time sitting still in school and focusing on the task before them. But it was only with the release of Ritalin (methylphenidate) in the early 1960s that these time-honored developmental lags (or were they simply developmental realities?) were gathered into the diagnosis “hyperkinetic syndrome.”
Psychiatry has been especially willing to accommodate the drug-related charge to syndromize new variants of existing syndromes. “Panic disorder” became a syndrome only after Upjohn released a new benzodiazepine, alprazolam, for which it sought a market within the broad universe of anxiety sufferers. Conveniently, the release of the drug in 1980 coincided with the release of the 3rd edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM), which obligingly found a place for “panic disorder” (and hence alprazolam) in its revised nosology. DSM-III was no less kind to Pfizer; it helped the manufacturer find a market for its newly released MAOI antidepressant, phenelzine, by adding “social phobia” to the nomenclature.
Critics write about the creeping medicalization of virtually every kind of discomfort, dis-ease, despondency, dysfunction, and dysphoria known to humankind. As a society, we are well beyond medicalizing the aches and pains that accompany everyday life. We are at the point of medicalizing life itself, especially the milestones that punctuate the human life cycle. This is the viewpoint especially of French social scientists influenced by Foucault, who seem to think that the “medicalization” of conception (via, for example, embryo freezing) or the “pharmacologization” of menopause via hormone therapy takes us to the brink of a new de-naturalizing control of biological time.
I demur. What we see in medicalization is less the “pathologization of existence” than a variably successful effort to adapt to pain and malaise so that life can be lived. The adaptation resides in the bi-level organizing activity that fuels and sustains the labeling process. It is comforting to group together disparate symptom clusters into reified entities such as neurasthenia or chronic fatigue syndrome or fibromyalgia. It is also comforting, even inspiriting, to associate with fellow sufferers, even if their fibromyalgia manifests itself quite differently than yours. All can organize into support groups and internet self-help communities and fight for recognition from organized medicine and society at large. These people do something about their pain. And they often feel better, even if they still hurt all over. If nothing else, they have accessed a collective illness identity that mitigates self-doubts and alienation.
But there may be other ways of adapting to chronic pain amplified, all too often, by chronic misery that veers into psychiatric co-morbidity. The problem with adapting to nonspecific suffering by labeling, medicalization, support groups, self-help literature, and the like is the pull to go beyond living with pain to living through the illness identity constructed around the pain. For some there are other possibilities. There is psychotherapy to address the misery, which may or may not prove helpful. There is the stoic resolve, more typical of the nineteenth century, to live with pain without collapsing one’s identity into the pain and waiting for the rest of the world to acknowledge it. There is the pursuit of symptomatic relief unburdened by illness identity and the existential angst that accompanies it. And there is a fourth way that leads back to my father’s medicine.
In the post-WWII era, there were no support groups or self-help literature or internet communities to validate diffuse syndromal suffering. But there were devoted family physicians, many of whom, like William Stepansky, were psychiatrically oriented and had the benefit of postgraduate psychiatric training. A caring physician can validate and “hold” a patient’s pain without assigning the pain a label and trusting the label to mobilize the patient’s capacity to self-soothe. He or she can say medically knowledgeable things about the pain (and its palliation) without “medicalizing” it in the biomedically reductive, remedy-driven sense of our own time.
Primary care physicians who listen to their patients long enough to know them and value them become partners in suffering. They suffer with their patients not in the sense of feeling their pain but in the deeper sense of validating their suffering, both physical and mental, by situating it within a realm of medical understanding that transcends discrete medical interventions.
Am I suggesting that fibromyalgia sufferers would be better off if they had primary care physicians who, like my father, had the time and inclination to listen to them in the manner of attuned psychotherapists? You bet I am. The caring associated with my father’s medicine, as I have written, relied on the use of what psychoanalysts term “positive transference,” but absent the analytic goal of “resolving” the transference (i.e., of analyzing it away) over time. Treating patients with chronic pain – whether or not syndromal – means allowing them continuing use of the physician in those ways in which they need to use him.
A parental or idealizing transference, once established, does two things. It intensifies whatever strategies of pain management the physician chooses to pursue, and it provides the physician with relational leverage for exploring the situational and psychological factors that amplify the pain. Of course, the general physician’s willingness to be used thusly is a tall order, especially in this day and age. It signifies a commitment to holistic care-giving over time, so that issues of patienthood morph into issues of suffering personhood. My father’s psychological medicine – of which contemporary notions of patient- and relationship-centered care are pale facsimiles — could not eliminate the pain of his syndromal sufferers. But it provided them with a kind of support (and, yes, relief) that few contemporary sufferers will ever know.
 G. M. Beard, American Nervousness, Its Causes and Consequences (NY: Putnam, 1881), pp. viii-ix.
 K. Barker, “Self-help literature and the making of an illness identity: the case of fibromyalgia syndrome (FMS),” Social Problems, 49:279-300, 2002.
 D. Healy, The Anti-Depressant Era (Cambridge: Harvard University Press, 1997), pp. 187-189.
 E.g., Peter Conrad, The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders (Baltimore: Johns Hopkins, 2007).
 A. J. Suissa, “Addiction to cosmetic surgery: representations and medicalization of the body,” Int. J. Ment. Health Addiction, 6:619-630, 2008, at p. 620.
 R. Gori & M. J. Volgo, La Santé Totalitaire: Essai sur la Medicalization de l’Existence (Paris: Denoël, 2005).
 Barker, “Self-help literature and the making of an illness identity,” op. cit.
 There are some powerful examples of such adaptation to pain in S. Weir Mitchell’s Doctor and Patient, 2nd edition (Phila: Lippincott, 1888), pp. 83-100.
 P. E. Stepansky, The Last Family Doctor: Remembering My Father’s Medicine (Keynote, 2011), p. 86. More than a half century ago, the American psychoanalyst Leo Stone wrote of “the unique transference valence of the physician.” Patients formed transference bonds with their analysts partly because the latter, as physicians, were beneficiaries of “the original structure of the patient-doctor relationship.” Small wonder that Stone deemed the physician’s role “the underlying definite and persistent identity which is optimum for the analyst.” L. Stone, The Psychoanalytic Situation: An Examination of Its Development and Essential Nature (NY: International Universities Press, 1961), pp. 17, 15, 41.
Copyright © 2012 by Paul E. Stepansky. All rights reserved.