[ed. note: Michael Jorrin, who I like to call Doc Gumshoe, is a longtime medical writer (not a doctor) who writes about non-financial health and medical issues for us a couple times a month (past submissions can be found on his author page here). Like all of our authors, he chooses his own topics and his words and opinions are his alone. Enjoy!]
This subject has been simmering in my mind for a while, but it just came to a boil a few days ago, when I read a piece in the New York Times Magazine. The magazine is the good grey newspaper’s attempt to do something a bit more trendy and appeal to a younger readership, perhaps. There’s a weekly section entitled “The Ethicist” where readers pose supposedly ethical questions to a supposedly wise individual with the credentials to offer supposedly ethical advice.
In this particular case, the unidentified questioner in New Jersey was wondering what he/she should do, if anything, about a physician who “just might be a quack.” The case the questioner posed was this: he/she personally knew 12 persons who had been diagnosed with Lyme disease by this single physician. Several of these persons had previously seen other physicians, characterized by the questioner as “Lyme disease experts” – presumably infectious disease specialists – and had been assured that they did not have Lyme disease. But the possibly quack physician, relying on a test that had to be sent “out of state,” diagnosed these 12 individuals as having Lyme disease and prescribed courses of treatment costing about $35,000, which could not be covered by insurance. The questioner, moreover, commented that according to the CDC, the incidence of Lyme disease in New Jersey was 29 per 100,000 population, so it was highly improbable from a statistical perspective that he/she would be personally acquainted with 12 persons with Lyme disease, noting that, based on the 29/100,000 incidence (or 0.0029%), he/she would need to know about 40,000 residents of New Jersey to come up with 12 that had Lyme disease.
The “ethicist,” Mr Kwame Anthony Appiah, who teaches philosophy at NYU, dedicated about half of his answer to a frail statistical quibble, based on the probability that the number of Lyme diagnoses is about one-tenth the number of actual Lyme infections in the community, and that the CDC incidence might be for a four-year period, so the questioner would only need to know about a thousand New Jersey residents to make it somehow statistically not impossible that 12 of them might have Lyme disease. Mr Appiah did not address the likelihood that these 12 individuals would all have been diagnosed by the same physician.
Mr Appiah then went on to make several points. One, that the physician might genuinely believe that the test she is using catches previously undiagnosed Lyme, that the condition is underdiagnosed, and that in that way she is actually helping these patients.
That’s possible, of course. But then Mr Appiah goes further. He asserts that these patients would have been grateful for the Lyme diagnosis, and that the questioner would likely get nowhere voicing his concern about the physician’s potential ethical transgression to the relevant New Jersey authorities. He then implies that these patients may have been “doctor shopping,” which he asserts is common among the “more affluent.” And finally, that those patients may be hypochondriacs.
At this point I boiled over and resolved to write a letter to the magazine (which they almost certainly will not print), in which I pointed out that if the Lyme diagnoses were incorrect, which they probably were, this physician was doing real harm to these patients: first, by preventing them from finding the real cause of their symptoms, and second, by consigning them to a lengthy and costly course of treatment that would likely bring about significant adverse effects. And I said that the suggestion that these patients were hypochondriacs was cynical and demeaning, and that Mr Appiah, by brushing off the questioner’s concern, had forfeited his claim to be an ethicist.
I do not know for a fact whether the physician in question is a member of the International Lyme and Associated Diseases Society (ILADS), whose guidelines list no fewer than 25 very common conditions which they claim may be due to Lyme disease. The list begins with fatigue, low grade fever and chills and proceeds through just about every common symptom to headaches, light-headedness, and dizziness. ILADS proclaims that Lyme disease can be present despite negative ELISA and Western Blot assays, and that individuals with negative results on those tests are just as likely to have Lyme disease as individuals with positive results.
Chronic Lyme is certainly a reality. There are instances in which a person ignores the initial symptoms of Lyme and does not receive treatment, in which case the pathogen, an elusive spirochete called Borrelia burgdorferi persists and may cause a range of symptoms. These nasty little bugs tend to wend their tricky ways to parts of the body where antibiotics find it hard to penetrate. But the symptoms listed by ILADS as being related to Lyme are much more likely due to other causes, and jumping to the Lyme diagnosis without some kind of positive identification of the pathogen is a huge disservice to patients.
Are patients grateful for a diagnosis, even if it’s wrong?
The answer to that one is YES! Here’s a little story: a friend of my wife had been experiencing severe headaches and went to the doctor, who gave him a diagnosis of idiopathic occipital neuralgia. When my wife told me that her friend had been diagnosed with this “condition,” I suppressed my laughter, since this friend of hers was also sort of a friend of mine and I wished him well. But I explained that idiopathic occipital neuralgia meant nothing more than a pain (neuralgia) in the back of the head (the occiput) for which there was no known cause (idiopathic). But her friend was happy, for a while, that his headache at least had a name. Before long, however, the real cause was discovered – a small non-malignant brain tumor, which was removed surgically without incident.
The moral of the story is that patients are generally happy to learn that their symptoms can be attributed to something with a name. Putting a name to the symptom implies that All-Knowing Medical Science has some kind of treatment up its sleeve, and that the patient can probably expect some kind of relief. No patient wants to go to the doctor and be told “We have no idea what’s wrong with you and we have no idea how to get you feeling better.”
And here’s where the “hypochondriac” label sneaks in: no doctor wants to be in the position of having to admit that he or she has no idea what the cause of the patient’s symptoms might be. Far, far better for the doctor’s self-esteem to brand the patient as a hypochondriac than to admit ignorance.
Where did this notion of hypochondria as a mental condition come from?
No matter where it came from, hypochondria – or, as it is sometimes more medically termed, hypochondriasis – is now enshrined in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) as a somatoform disorder. The latest iteration of the DSM now calls it “illness anxiety disorder.” We’ll discuss the DSM criteria later in this piece. But the way the term “hypochondria” has evolved over about five centuries to acquire the present meaning tells us a lot.
“Hypochondria” started out as an anatomical designation. The progression of definitions in the OED demonstrates how this term came to its present meaning. The first two definitions in the OED are, first, as the plural of the word “hypochondrium:” “1. Those parts of the human abdomen which lie immediately under the ribs and on each side of the epigastric region. 2. The viscera situated in the hypochondria: the liver, gall-bladder, spleen, etc., formerly supposed to be the seat of melancholy and ‘vapours.’ ” The earliest citation dates from 1563, and refers to an antidote for this condition: “…healeth flatulence of Hypochondria.”
From this mostly anatomical definition, hypochondria evolved to a sort of morbid state of mind. In 1668, Dryden used the term to mean melancholy, and Robert Burton, in The Anatomy of Melancholy (1621), pronounced that the spleen was the source. But even though this state of mind was thought to have a physiologic source – melancholia means “black bile,” emitted by the spleen – from early on, it was recognized that people could find relief from this affliction by non-medical means. Elsewhere in Burton’s masterpiece he points to wine, music, and good dinners shared with friends as remedies for melancholy. A 1710 citation from The Tattler in the OED: “Will Hazard was cured of his hypochondria by three glasses.”
However, the term “hypochondriac” was decidedly non-flattering. Boswell, in 1791, said “but let not little men triumph upon knowing that Johnson was an Hypochondriak.” And the Times (London, not New York) in 1973 states that “George S. Kaufman was an obsessive card player, womanizer, necrophobe, hypochondriac…”
As we pursue the evolving uses of the term over time, something like the current definition emerges. The OED says, “Hypochondria in its pathological aspect: a disorder of the nervous system, generally accompanied by indigestion, but chiefly characterized by the patient’s unfounded belief that he is suffering from some serious bodily disease. Now regarded as a condition characterized by a morbid preoccupation with one’s bodily health, together with unfounded beliefs and exaggerated anxieties about real or imagined ailments, usually the symptom of a neurotic disorder.” A 1905 citation by M. Craig says, “Though hypochondriasis is usually found in patients in whom no bodily disease can be diagnosed, it may be associated with organic disease, the hypochondriacal symptoms being the patient’s misinterpretation of true physical signs.”
There we have it. The “hypochondriac” is experiencing genuine physical signs, and attributing these physical signs to the progression of some dread unnamed and undetected disease. The physical signs are not imagined, and it’s quite natural to attempt to ascribe a cause. That’s where abundant and widespread medical speculation and, sometimes, deliberate misinformation comes into the picture.
“Le Malade Imaginaire:” the hypochondriac at stage center
Molière’s 1673 comedy did more than make the hypochondriac something of an object of ridicule. It strongly made the point that this tormented individual was not just a victim of his own “morbid preoccupation” with his own bodily health, but also the victim of exploitation by unscrupulous physicians. In the play, Argan is a very rich man who is trying to marry his daughter to the son of a doctor, soon to be a doctor himself, so that he could have the attention of two doctors without having to foot the bill. His brother. Béralde, is quite certain that Argan is entirely healthy, and that the doctors that are “treating” him are doing nothing more than taking his money. Among the treatments they prescribe are enemas, which require Argan to leave the stage frequently, but also leave him drained, not only of the contents of his GI tract, but of energy.
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The typically complicated plot continues. It emerges that the most sensible person in the cast is Toinette, the chambermaid. At the conclusion of the play she appears disguised as a doctor, proclaiming herself to be the greatest physician in the kingdom, and dismissing all of Argan’s previous doctors as ignorant quacks. She pronounces that Argan’s problems are that one of his arms and one of his eyes is stealing all of the nutrition that Argan takes in, and therefore that arm should be amputated and that eye removed. That is too much even for Argan. He realizes that he has been deluded, returns to his senses – but not without a lot more dramatic jiggery-pokery – permits his daughter to marry her lover, and, presumably, all will henceforth be well.
The play is mostly a comedy, and Argan is mostly ridiculous. But the spectacle of a wealthy man being milked by doctors struck a note of real concern, and continues to do so 350 years later. We can assume that most of the symptoms experienced by Argan were gastrointestinal in origin. Being a rich man, he ate a lot of rich food – roast goose, foie gras, butter, cream. Some of the remedies employed in those days made a certain amount of sense – a month or so at a spa, drinking nasty-tasting mineral water, dieting, taking long walks – and they still make a certain amount of sense. Some other remedies, then and now, don’t bear thinking about. But the suggestion that GI disturbance signaled a serious illness, requiring drastic remedies, was, and still is, enough to move people into that state of morbid anxiety that characterizes hypochondria.
Many of the symptoms that troubled people in Molière’s day were probably intestinal. Nobody knew anything about high blood pressure or high blood sugar or elevated cholesterol, and it was assumed that creaky joints were just an inevitable sign of age. And much the same could likely be said for a couple of centuries after the imaginary invalid was shocked out of his hypochondria. But times have changed, and now we are assaulted daily by warnings about such matters as “seven tell-tale signs that you are about to have a stroke,” … or that you’re at risk for a heart attack, or that you already have cancer.
What could be more anxiety-producing than the list of symptoms that the ILADS proclaims may be due to Lyme disease. Here is a presumably bona-fide medical organization – the International Lyme and Associated Diseases Society – that lists conditions that might be the result of an untreated, unrecognized disease. Moreover, these conditions escape detection by the tests used by infectious disease specialists, and can only be detected by special tests that are not recognized by most doctors and not covered by your insurance company.
Just to reinforce that point, here’s the list of those conditions, quoting directly from the ILADS website:
“Lyme Disease Symptoms:
Low grade fevers, “hot flashes” or chills
Migrating arthralgias, stiffness and frank arthritis
Chest pain and palpitations
Abdominal pain, nausea
Poor concentration and memory loss
Irritability and mood swings
Blurred vision and eye pain
Cranial nerve disturbance ( facial numbness, pain, tingling, palsy or optic neuritis)
Who doesn’t have some of those symptoms at some point? And put that together with this statement from the ILADS website, and you have inducted hordes of the credulous as Lyme disease patients.
“…The two-tier diagnostic criteria, requiring both a positive enzyme-linked immunosorbent assay (ELISA) and western blot, lacks sensitivity and leaves a significant number of individuals with Lyme disease undiagnosed and untreated. …Diagnosis of Lyme disease by two-tier confirmation fails to detect up to 90% of cases and does not distinguish between acute, chronic, or resolved infection.”
In other words, almost any common symptom could be due to Lyme disease, and the accepted mainstream tests don’t detect Lyme 90% of the time. That’s a formula for inducing hypochondria in huge swaths of the population, and for enriching a regiment of unscrupulous quacks.
But it’s not just the unscrupulous quacks that can give rise to this kind of anxiety. Here’s another story, which some of you may remember.
The case of A. Bartlett Giamatti
Giamatti was, for just 154 days, the Commissioner of Baseball. Before that, from 1978 to 1986, he had been President of Yale University, and before that he had been a professor of English Literature at Yale, specializing in the Renaissance. But his first love was baseball. He was a deep-dyed fan of the Red Sox, in spite of the inconvenient fact that New Haven is closer to Yankee Stadium than it is to Fenway. So when he was offered the position as commish, he said “to hell with Yale,” and jumped at the chance.
On September 1, 1989, Bart Giamatti died of a heart attack at his home on Martha’s Vineyard. The day before his death, Giamatti received a warning from Dr William Cahan, who was a senior attending surgeon at Memorial Sloan-Kettering in New York. About a week before that, Cahan had been watching a game between the Mets and the Dodgers at Shea on his 45-inch television and, when the camera got a shot of Giamatti sitting in his field-level box seat, Cahan noticed that Giamatti’s fingernails showed signs consistent with severe progression of emphysema or lung cancer. The condition is termed “clubbing,” and consists of a sort of reverse curvature of the fingernails – instead of curving down around the edges and at the ends, they curve upwards. This can be a sign of insufficient oxygen in the blood, which can have a number of different causes. According to Cahan, the clubbing in Giamatti’s fingernails was about as severe as it gets, and Cahan’s warning to Giamatti was that he should be examined right away.
Obviously, the warning came too late. But the story about Giamatti’s death and the warning about his fingernails got extremely wide coverage the length and breadth of our baseball-loving land. As a result, I have no doubt that many millions of people took careful looks at their fingernails and wondered whether they too were at high risk for having a heart attack or some other kind of dire health event. Pictures of Giamatti’s clubbed fingernails did not accompany the stories about his death and Cahan’s warning. As far as I remember, there were no carefully considered warnings to the general public along the lines of “if your fingernails look like this, go see your doctor.” What most people who paid attention to the story were left with was that if their fingernails looked a bit odd, they might be about to have a heart attack. Is that not a trigger for morbid anxiety?
The DSM Diagnostic Criteria for hypochondriasis
Just to be scrupulously even-handed about this, here are the DSM criteria:
- Preoccupation with fears of having, or the idea that one has, a serious disease based on the person’s misinterpretation of bodily symptoms.
- The preoccupation persists despite appropriate medical evaluation and reassurance.
- The belief in Criterion A is not of delusional intensity (as in Delusional Disorder, Somatic Type) and is not restricted to a circumscribed concern about appearance (as in Body Dysmorphic Disorder).
- The preoccupation causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.
- The duration of the disturbance is at least 6 months.
- The preoccupation is not better accounted for by Generalized Anxiety Disorder, Obsessive-Compulsive Disorder, Panic Disorder, a Major Depressive Episode, Separation Anxiety, or another Somatoform Disorder.
If you ask me, the DSM criteria, despite their best efforts to be accurate and precise, are somewhat vague. What is one to make of Criterion B? If a normal, sane, ordinary person like you or me goes to the doctor with a symptom, and the doctor cannot pinpoint the cause, but tries to assure us that it’s nothing to worry about, what’s to prevent us from becoming preoccupied and suspecting that indeed there is something to worry about? What is “appropriate medical evaluation and reassurance” supposed to consist of?
The DSM criteria acknowledge, at least, that the symptoms experienced by these persons are real and not imaginary. They comment that patients may exhibit a trait which they characterize as “doctor-shopping,” and that the doctor-patient relationships tend to deteriorate. And they add that such patients “strenuously resist referral to mental health settings.”
I should think so. The patient in question goes to the doctor with a physical symptom, the doctor is not able to point to the cause and does not suggest any treatment that might alleviate the symptoms, and, if the patient is not satisfied with that response, the doctor suggests to the patient that he or she should consult a psychiatrist?
“So, doctor, you’re the one who can’t figure out what’s wrong with me, and you’re telling me that I’m crazy?”
A more balanced view, perhaps …
Okay, Doc Gumshoe, simmer down a bit. We can all agree, I hope, that hypochondria is a real condition that affects lots of people, and, furthermore, troubles them considerably. But an equally important point is that individuals affected by this condition should not be personally disparaged or have their concerns trivialized or deemed imaginary.
A factor that likely contributes to this condition is that we live in a climate that encourages the belief that there is – or should be! – an answer to every health question. Four or five centuries ago, those symptoms were thought to be due to “vapours” or “humours” emanating from the spleen or other inner organs. That might have been easier to accept than the absence of a clear diagnosis in the present day, when medicine is presumed to be an exact science.
People now demand to know what causes the symptoms they feel, and what can be done to alleviate them. Many people will simply not be satisfied with that uncertainty, and some people will become obsessed with the need to link their symptoms with a cause. Does that constitute a “mental disorder,” as in the DSM?
Maybe, maybe not. The crucial point, however, is that this morbid anxiety is externally induced. We’re surrounded by “information” of varying degrees of reliability about a huge range of diseases. The state of your fingernails might tell you whether you’re about to keel over with a heart attack. At this very moment, you have food in your refrigerator that can cause diabetes, or cancer, or any of a range of dire afflictions. And secret cures abound, which your doctor will not tell you about. It’s completely up to you, to be suspicious about everything, to follow up every clue, to be eternally vigilant. It’s a formula for hypochondria.
So, what could alleviate this hypochondria, this morbid anxiety? One thing that will definitely not help, in my opinion, is being dismissed as hypochondriacs by the very physicians whose help we sought. Instead, physicians need to engage patients in further discussion, and perhaps recommend interventions that, although they may not precisely address a physiologic mechanism that causes the symptoms in question, may help to alleviate those symptoms in some way. A case in point: fibromyalgia, a puzzling but painful condition, is often successfully managed with antidepressants – but not by a referral to a psychiatrist. Sometimes a treatment works even if we don’t understand its mechanism of action.
In a Doc Gumshoe piece about placebos, I observed that placebos seemed to be entirely ineffective in treating infectious diseases, but much more effective in treating pain, depression, and conditions in which the symptoms were mostly patient-reported. Clinical trials of antidepressant medications are plagued by high placebo responses, so that it’s sometimes difficult to establish the efficacy of the active drug, because the placebo response is almost as high. My conclusion, and the conclusion of many observers, is that the response is due not to the placebo itself, but to the fact that even in the placebo arms of these trials, the patient is interacting with a health-care provider. The interaction in itself has a healing effect.
A Canadian study in electric stimulation therapy for chronic back pain supports this view. The study divided patients into four groups. One group received real therapy accompanied by real discussion with a therapist; a second group received fake therapy and real discussion with the therapist; a third group received the real therapy, but minimal interaction with the therapist; and the fourth group got the fake therapy and little interaction with the therapist. Unsurprisingly, the first group got the most benefit – 77% of patients reported significant pain relief. But, surprisingly, the group that got the fake therapy and real discussion with the therapist reported significantly better pain relief than the patients who got real therapy and minimal interaction with the therapist, a 55% reduction for the former versus a 44% reduction for the latter. So it’s clear that discussion with the doctor has a therapeutic effect, and, in some cases, perhaps more of a therapeutic effect than the actual treatment.
But not if the gist of that discussion is that the doctor, or the health-care provider, characterizes you as a hypochondriac, making it clear that he or she thinks that your symptoms are imaginary and that you need to go to a mental health specialist to get your brain swept clear of cobwebs. That’s the kind of response that I fear dispatches patients to the ever-ready regiment of quacks. “No!” says the patient. “I am not an imaginary invalid! I will not be dismissed as a hypochondriac! I’m not making a mistake about my symptoms, and I will keep looking for an answer!”
The physician who continues to help the patient look for an answer is the physician we need – not the one who labels the patient as a hypochondriac.
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I have a backlog of subjects I need to address, and will look into at least some of them in an upcoming installment. A couple will be more amusing than illuminating. Travis flipped one onto my to-do pile, Gumshoe Citizens keep making comments and asking questions, and I even got a suggestion from a stranger to these parts about an entirely unexpected phenomenon that just might be a factor in Alzheimer’s disease. Keep it coming, and thanks to all! Michael Jorrin, (aka Doc Gumshoe).