Costing an Arm and a Leg —

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On the occasion of a new documentary about the subject, philosopher of medicine Carl Elliott writes in Slate about apotemnophilia. “The victims of a growing mental disorder are obsessed with amputation.” Apotemnophilics at times succeed in obtaining a medically unjustified amputation of a healthy limb either from a sympathetic surgeon or after intentionally damaging a limb so badly that it must be amputated. I reflected here on Elliott’s earlier thoughtful overview of the phenomenon, A New Way to be Mad, published in The Atlantic Monthly in December 2000, which he says inspired the documentary film.

The phenomenon is of course of interest for its — shall we say — titillating gruesomeness, but for Elliott and myself another concern revolves around the significance of the attempt to make it, or the presumption that it is, a psychiatric disorder. Should it be considered so? And if so, is it its own category of disorder or should it be considered a manifestation of another, already recognized, class of disorder? Elliott notes that it is usually treated as if it is a paraphilia or displaced sexual disorder, because “many wannabes are attracted to the idea of themselves as amputees, and some are attracted to other amputees.” But, in the absence of a body of clinical experience with apotemnophilics, it is not clear to me that those who would like to see themselves with amputees are the same as those who would like to see themselves as amputees. Perhaps it is heterogeneous? If a disorder, is it closer to a body image disorder? In body dysmorphic disorder, the individual insists that one of their bodily features is misshapen or grotesque (although others do not perceive it in that way) and may seek surgical correction. Some BDD is psychotic (delusional) in degree and improves with treatments such as antipsychotic medication. And some psychotics under the influence of other kinds of delusions mutilate or injure themselves as well, sometimes grotesquely — I have seen enucleations, castrations and, yes, amputations of a hand, an arm or a leg.

Furthermore — how akin to gender identity disorder is it, and how deep may the analogy go to sufferers’ seeking sex reassignment surgery in that condition? Is it a type of obsessive compulsive disorder? Broadly speaking, compulsions are of two sorts, those which are experienced as distressing by the affected individual, who attempts to resist complying with them; and those which are not resisted and mostly cause distress only to those surrounding the individual. What relationship might it bear even to Munchausen’s Disease, in which an individual simulates or creates a medical condition in themselves presumably for the sympathy and support they aspire to?

Or is apotemnophilia on a continuum with other body modifications or mutilations — scarification, piercing, tattooing — we do not usually consider evidence of psychiatric disorders? If you come away from the film about apotemnophilics experiencing them sympathetically no matter how difficult you find it to understand their desires, will your sympathy be for them as mentally disordered and distressed or as oppressed by a society that does not allow them the gratification of desires which are not understood and sometimes abhorred but which do no harm to anyone else?

Elliott is interested in, as he puts it, “why so many people have begun to use the tools of medicine for purposes other than curing illness, such as self-improvement and self-transformation”, and I share that interest especially as it applies to the appropriation of growing dimensions of distress by psychiatry and the expanding notion of the indications for psychopharmaceutical treatment.

Obviously, if the boundary between curing illness and self-improvement is a murky and shifting one, then so will be the definition of illness. Elliott observes that it is well-known to historians of medicine that illnesses come and go, and he lists a number of conditions once seen as rare or nonexistent but then ballooning in popularity:

“social anxiety disorder, post-traumatic stress disorder, attention deficit-hyperactivity disorder, gender identity disorder, multiple personality disorder, anorexia, and chronic fatigue syndrome.”

He attempts to generalize about these conditions that:

“…(t)his is not simply because people decided to “come out” rather than suffer alone. It is because all mental disorders, even those with biological roots, have a social component. While these new conditions are very different from one another, they share several important features.

  • First, the conditions are usually backed by a group of medical or psychological defenders whose careers or reputations depend on the existence of the disorder and who insist that the condition is real.
  • Second, there is usually no hard data about the causes or the mechanism of the condition.
  • Third, no independent lab tests or imaging devices are available to provide objective confirmation of the diagnosis, which is usually made solely on the basis of the narratives and behavior of their patients.
  • Finally, there is often (but not always) a treatment for the condition even in the absence of knowledge about its causes and mechanism.”

The phenomenon of faddish diagnoses in psychiatry has been one of my pet interests, about which I have written, taught and lectured since soon after my training. I would quibble with the list of conditions Elliott includes but more significantly with his attempt to generalize about the phenomenon. Elliott may be, to paraphrase his first point above and turn it back on him, staking his credibility on the existence of shared generalities among a group of phenomena he insists is homogeneous but may not be.

First, a contribution of equal importance to the medical/psychological practitioners’ insistence on the reality of these diagnoses is often the incredible appeal they have to classes of patients who are deeply motivated to have them. There may be a core of ‘legitimate’ sufferers the class of whom becomes broadened by others’ insistence on joining that class. This in turn may obscure the ability, when the supposed class of sufferers are studied, to find the hard data, the lab or imaging abnormalities that could definitively define the condition. In a sense, the core findings are diluted beyond statistical significance by the influx of wannabes to the class.

Often, in particular, the controversial syndromes are on the borderline between psychiatry and other medical areas (consider attention deficit [neurology], fibromyalgia [rheumatology], TMJ [orthopedics or dentistry], hypoglycemia [endocrinology], spastic colon [gastroenterology], chronic fatigue [originally considered to be chronic Epstein-Barr virus infection]) and relate to shifting conceptions on the part of both medical science and the lay public about the mind-body boundary. Certain classes of patients have long been interested in having their distress defined “medically” instead of “mentally”, to whatever extent the zeitgeist draws a distinction. This, of course, bears on Elliott’s third point, that the diagnosis “is usually made solely on the basis of the narratives and behavior of … patients.” This is no less true of the vast majority of ‘legitimate’ psychiatric disorders; the CNS is still a black box. No definitive tests or imaging studies exist for any psychiatric disorder. The more important thing about the faddish or dubious diagnoses may be, in a way, how similar they are to, rather than how different from, the universe of the rest of psychiatric diagnoses.

And Elliott’s fourth generalization too is true of most psychiatric diagnosis as well — that there is often “a treatment for the condition even in the absence of knowledge about its causes and mechanism.” For example, the universe of psychiatric patients began to be ‘carved up’ differently between those with schizophrenia and manic depression (bipolar disorder) after the arrival in the early ’50’s of lithium carbonate on the scene as a treatment for the latter, and again after the entrée of chlorpromazine (Thorazine), the first of the so-called antipsychotic medications. More recently, I have written here in the past about the much-observed (and ongoing) redefinition of the scope of antidepressant-responsive conditions after the introduction of Prozac in the early ’80’s ushered in the SSRI era and made antidepressant prescribing so much easier. One may argue that the most important influence of new drug developments on diagnosis is exerted via the pharmaceutical companies’ inexorable marketing pressures, or it may be the prescribers’ pull to the novelty of new agents. In any case, in deriving principles that apply generally to psychiatric diagnosis, Elliott has failed to identify what may be distinctive about or explanatory of the controversial diagnoses.

Furthermore, one must not focus on the social factors in the rise of a diagnosis to the exclusion of the medical-scientific ones. Disparate diagnoses may balloon through their own unique balance between being better recognized (it was there, but we didn’t see it before), being reclassified (it was there but we referred to it as or lumped it in with something different before) or being created (it wasn’t there until people began to shape their behaviors to the newly-promulgated definition). It’s like the old joke about the umpires and the strike — “I calls ’em as they are”; “I calls ’em as I sees ’em”; and “They ain’t strikes ’til I call ’em.”

To return to apotemnophilia, it is not clear where it will fit with these other faddish diagnoses, but we will probably get an opportunity to see, as interest in it appears to be burgeoning, both among the wannabes and among clinicians.

Here is a site to which Elliott points from “a group of medical, psychological and psychiatric professionals committed to increasing the knowledge about this disorder, particularly within the medical and psychological communities”; they propose renaming it Body Integrity Identity Disorder. Elliott is troubled by his observation that mental health practitioners have so far proposed no treatment other than surgery. He seems to consider this a failing in the face of an obvious mental disturbance. I would suggest an alternate explanation. Psychiatrists and other therapists are more accustomed than the lay public to nonjudgmental toleration of a wide variety of unconventional and disturbing thoughts , beliefs and feelings in their patients. As bizarre and gruesome as the apotemnophilic’s desires are, while they are not easily understood they may be more tolerable to the mental health practitioner sitting with the patient than to others. (I have never sat with a patient with this preoccupation myself; I don’t know.) These patients, not believing they have a psychiatric disturbance, will probably present only rarely if ever for a mental health consultation. They may not be treatable when they do present, since psychiatric treatment cannot be compelled against one’s will unless a person is so disturbed that they represent an imminent danger to themselves or others, no matter how bizarre we find their symptoms. Most psychiatric practitioners are respectful of that constraint. But if a sufferer presents acknowledging their distress and its psychiatric nature and voluntarily seeking treatment, I would wager that few psychiatrists would be at a loss to treat them in any one of a variety of ways depending on how they formulated the individual case, perhaps along one of several hypotheses I suggested above about where BIID/apotemnophilia may fit; or others.The number of psychiatrists who would send such a patient for surgical intervention would, I would venture to say, be vanishingly small. Perhaps, if the condition does burgeon in popularity to an extent that mainstream surgeons (rather than the apparently marginal characters who seem to be performing the bulk of the amputations these days) have to pay attention to it, psychiatric evaluation and clearance will become as de rigeur before surgery as it has become for gender transition surgery.