And in that moment, I can tell by her face that no one has updated the chart. It still says Conversion on the line for diagnosis. Nobody has put in the test results and new diagnosis from last October. I can see it as plainly as I can see that her eyes are brown. We’re still suspect, and this still isn’t over.
This week she updated with the news of the definitive diagnosis for the medical reasons behind her daughter’s paralysis. It would be easy to think that Ella Frech’s case is an anomaly. We might think that it’s unusual for a serious medical condition to be dismissed as a pscyhological disorder.
It isn’t. It is woefully common, and there’s a reason for it.
The Diagnosis that Doesn’t Discriminate
It isn’t only Acute Motor Axonal Neuropathy that gets the nutcase treatment.
Stephen Gaudet writes here about being accused of faking his severe asthma:
Feeling proud about what I had accomplished through daily exercise, I shared my marathon story with one of the intern doctors who was assigned to me. Rather than congratulating me, he basically accused me of faking my asthma. His words were ” There’s no way you could’ve walked a marathon if you have severe asthma.” I found out later that in my chart he actually wrote, “patient presents with factitious asthma, claims he walked a marathon“. That probably explains why some of the nurses were treating me so strange during the hospitalization. A rumor had spread that my asthma was very mild and probably psychosomatic in nature. I remember some of the medical staff trying to convince me that my breathing difficulties were all in my head and that I had some kind of generalized anxiety disorder. Are you freaking kidding me! And even scarier, this happened at a well respected teaching hospital.
That incident caused me a lot of grief and took over 3 years with lots of letter writing by my pulmonologists to have that false information removed from my medical record. The reality is that these are the kinds of screwy preconceived generalizations that people have about the way sick people should look and behave. And if I want to be completely honest here, there have been times when I’ve guilty of the same.
For background: Gaudet is a respiratory therapist who is treated by one of the top pulmonologists in the nation.
Here’s Dr. Michelle Roger, a neuropsychologist, writing about the mental health misdiagnoses of patients with dysautonomia:
Just about every Dysautonomia patient with whom I’ve spoken over the last few years has, at one time or another, been told that the symptoms they were experiencing were all in their head. Diagnoses such as Anxiety disorders, Depression, Conversion or Somatoform disorders, and even Bipolar disorder are haphazardly applied to patients when no clear aetiology can be discovered to explain their symptoms. Normal reactions to abnormal situations, and purely medical/physiological symptoms are over-pathologised or misdiagnosed with alarming regularity, and to the detriment of the patient.
When unfounded these diagnoses leave a mark on the patient, a wound which if left untended will follow and influence all future relationships with the medical professionals. It also leaves a glaring mark on medical records that will be incorporated into future investigations and the overall diagnostic process. Even when unsubstantiated or proven to be untrue following psychological assessment, it can prove extremely difficult to remove such diagnoses from a patient’s medical file.
Here’s a summary of Dr. Alex Flore’s presentation on the problem of mitochondrial disease being misdiagnosed as Munchausen syndrome by proxy:
It is possible that what may be interpreted as “red flags” of Munchausen’s may alternatively be attributed to the demands and anxiety related to care of a very sick child. For example, anxious parents may not give a good history, or may “doctor shop” because they are unsatisfied and may be unhappy with the care their child is getting, especially when they feel that no one can actually diagnose, treat or understand the problem. Certain conditions, especially mitochondrial disease, will present with intermittent symptoms, and it will take a skilled and patient clinician to arrive at the right diagnosis – one that is an illness not Munchausen’s by proxy.
Psychologists have described that the population of patients and parents of children with Mitochondrial Disease are much more vulnerable to a false Munchausen’s by proxy accusation simply due to the nature of the disease. In fact, a hallmark characteristic of mitochondrial disease is the presentation of several unrelated symptoms that together, “don’t make sense”. Clinicians who feel that a parent is intentionally making symptoms appear, is behaving to insure that the illness continues, and consults multiple physicians may suspect Munchausen’s – but should still “trust, then verify.” In other words, believe the parents, run appropriate diagnostic tests, seek the input of every part of the child’s team, and take very seriously the responsibility to the child to act as an advocate and do no harm.
Non-psychiatric misdiagnoses happen, too, of course. It is frustrating when a physician (or team of physcians) flubs a diagnosis through honest error — we humans aren’t ominiscient, so it’s bound to happen. It’s galling when the misdiagnosis involves dismissing serious serious symptoms as some much more benign illness that doesn’t fit with the case history. But pushing off a poorly-substantiated mental health label on a patient with an atypical presentation is both physically and emotionally harmful to the patient.
Unfortunately, this dangerous habit is actually enshrined in medical practice.
I Guess You’re Just Nuts, Then?
Many misdiagnoses are just idiocy. Some popular lazy-diagnoses include fibromyalgia, depression, and anxiety disorders. All of these disorders have specific criteria you can use to evaluate yourself (or your patient) and see if they apply. It’s almost helpful when a physician throws out with confidence, “I think it’s probably just ________” and inserts some illness utterly outside his or her specialty, and which a quick Google search would immediately rule out. Then you know you have a stupid doctor, done. It’s wearying, and can put you off the medical profession for a while, but it’s possible to come to a definitive conclusion one way or another.
There’s at least one mental health diagnosis, however, that can’t be ruled out by logic and good medicine.
Conversion Disorder, which is what Ella Frech was persistently misdiagnosed with (despite presenting with symptoms of a known side effect of one of the medications she was taking), is where modern medical practice bares its hubris.
There are no standard tests to check for conversion disorder. The tests will depend on what kind of signs and symptoms you have — the main purpose is to rule out any medical or neurological disease.
In other words, and you can read the whole page and see for yourself, if you’re definitely sick but no one can figure out why, then conversion disorder.
Dr. Allen Frances writes at Psychology Today about the failed effort to get the DSM to attempt even a modest stab at valid diagnostic criteria above and beyond heck if we know:
Many of you would argue that I didn’t go nearly far enough- that there should be no ‘Somatic Symptom Disorder’ at all in DSM 5 because there is no substantial body of evidence to support either its reliability or its validity.
. . . I am sympathetic to this view, but realized that it would have no traction with the work group and chose instead to lobby for what seemed to be clearly essential and relatively easy changes that would solve most, if not all, of the problem.
. . . My letter cautioned DSM 5 that it was invading dangerous territory. Here was my warning to the DSM 5 work group:
• ‘Clearly you have paid close attention only to the need to reduce false negatives, but have not protected sufficiently against the serious problem of creating false positives. You are not alone in this blind spot—in my experience, inattention to false positive risk is an endemic problem for all experts in any field. But your prior oversight needs urgent correction before you go to press with a criteria set that is so unbalanced that it will cause grave harms.’
• ‘When psychiatric problems are misdiagnosed in the medically ill, the patients are stigmatized as ‘crocks’ and the possible underlying medical causes of their problems are much more likely to be missed.’
• ‘Continuing with your current loose wording will be bad for the patients who are mislabeled and will also be extremely harmful to DSM 5, to APA, and to your own professional reputations.’
I also raised the point that this could lead to a boycott of DSM 5. Pretty strong stuff, I thought. But totally ineffective.
Somatic Symptom Disorder (which is the umbrella term in the current terminology under which Conversion Disorder falls) is thus a particularly hazardous diagnosis because it has no symptoms of its own.
It is literally a disorder whose defining symptom is, “We the physicians don’t know what you have. Therefore, it must be psychological.” This is an awkward assertion for a profession that has evolved more in the past century than any other field of human endeavor. The developments in medical research just in the past twenty years are astonishing and marvelous. My children’s high school biology textbooks are utterly different than mine, because the depth and scope of our knowledge about human cells and the chemistry of the human body is orders of magnitude past what we knew a generation ago.
It seems, therefore, ludicrous that any sane person could hold that our knowledge of medicine is now perfectly complete. But this is the implicit assertion of somatic symptom disorders.
I sometimes joke that idiopathic means that you and your doctor both agree the other person is an idiot. But really it just means we don’t know. That happens. Humans aren’t all-knowing. What is the sane response to ignorance? It isn’t to fabricate some fanciful explanation to cover over your lapse. The sane response is to humbly admit, “I’m sorry I don’t know.” And, where the stakes are high, the sane person adds, “And we should keep investigating until we get a solid answer.”