I fell upon a Twitter thread by Dr. Nicole Lee Schroeder in November. Here is the entire thread if you have access.
She began with this observation:
When people critique self-diagnosis as a valid practice they misunderstand the relationship between medicine, diagnostics, and medical training. As a historian of medicine this is endlessly frustrating to me.
Flickr.com: Rafael Edwards
And she ends her thread with this observation:
Self dx [diagnosis] is valid, it’s understandable, and it literally saves lives. To treat patients as if they’re incapable of this work or uninformed is to stake a claim that power and privilege over care and knowledge belong to professionals alone.
As someone with celiac disease, as many of you know, I have often heard quoted a study that confirmed one-third of those who self-diagnose with the condition are incorrect in their diagnosis. This lone study is referenced by almost all well-meaning celiac disease associations and patient support organizations. It is always followed on with the recommendation to get tested and use the “gold standard” of having an endoscopy to become a biopsy-confirmed patient with celiac disease.
However, there is a strange paternalistic undertone in that recommendation as these organizations almost always note that those who do not receive a biopsy-confirmed diagnosis may be tempted to consume gluten-laden products, hence the rationalization for ensuring you have a biopsy-confirmed diagnosis.
But what is not mentioned by these organizations is that the exact same study they quote equally confirms that two-thirds, the solid majority, of those who self-diagnose with celiac disease are correct in their diagnosis.
It would require an entire tangent to discuss the “for your own good” paternalism that permeates the entire medical industrial complex, but I would question the compelling nature of a biopsy-confirmation when inadvertent gluten consumption for many of us is a run to the emergency department or at the very least pretty severe symptoms that knock us out for 48 hours.
What is the benefit of receiving a medical diagnosis for a patient with a chronic illness? It is not the same set of benefits as a medical diagnosis for an acute or terminal condition.
Unfortunately, in a world of fear-infused reactions and entrenchment stuck in “I did my own research,” the practice of self-diagnosis is even more marginalized and derided these days than it has ever been (and it was already heavily frowned upon).
Furthermore, depending on the condition that is self-diagnosed, it can absolutely lead to dosing with supplements and substances that will harm and maim.
But what is overlooked is how much diagnosis by healthcare practitioners leads to dosing with substances that will harm and maim as well. And given that it takes on average seven years to be correctly diagnosed by a healthcare practitioner for celiac disease in Canada and the US (and can readily take as long as 12 years) it would be possible to argue that awaiting a correct diagnosis from a healthcare practitioner may also harm and maim (the villi are damaged in the small intestine for those with celiac disease exposed to a regular gluten-filled diet).
There is an equivalent set of problems for self-diagnosis as much as there is for diagnosis bestowed upon you by an appropriately-accredited medical professional: zealotry and dogma respectively.
Diagnoses for the entire suite of chronic conditions often have very wide margins of error.
Examples of diagnoses with a condition that the patient did not have:
Asthma? ~50% misdiagnosed.
Epilepsy? ~ 20% misdiagnosed.
Type 2 Diabetes? ~ 20% misdiagnosed (keeping in mind I have already discussed at length in other papers the fact that the biomarker screening for this condition is also controversial and captures higher numbers of individuals for treatment intervention with little long-term benefit).
Multiple Sclerosis? ~20-30% misdiagnosed.
Cancers? All bundled somewhere in the range of 10-20% misdiagnosed although some cancers more prone to misdiagnosis than others of course.
Hemochromatosis? ~50 misdiagnosed.
Examples of a failure to diagnose something that the patient did have:
Ehlers-Danlos? ~56% misdiagnosed with something else.
Lupus? ~76% reported an initial misdiagnosis.
Endometriosis? ~74% receive one false diagnosis prior to correct diagnosis.
The practitioner diagnostic world is treating millions of people for conditions they do not have or failing to treat millions of people for conditions they do have.
And do we really understand what treatment does in terms of hard morbidity and mortality outcomes? Not really, because it would be considered unethical to deny treatment to a control group for a condition we believe we have a means to treat to improve morbidity and mortality outcomes.
If we turn back to a point in history before which the treatments were in place then we almost always face the challenge of the changing definitions of conditions and illnesses. But asthma might be a reasonable example of what is likely prevalent in many chronic conditions as asthma is has been identified as a condition predating the introduction of drugs to treat it.
The introduction of bronchodilators in the 1960s corresponded with a huge spike in mortality for asthma. By the 1990s mortality from asthma had dropped back to the 1930s level to coincide with the shift in treatment away from bronchodilators and towards corticosteroid suppression of inflammation. And yet, in the 1930s the only treatment for asthma was at home nebulizers. Since the 1990s the mortality rate for asthma has steadily declined further in most countries. However, there is no way to know whether the significant decline in smoking rates vs. the correct diagnosis and treatment for asthma since the 1980s or so, influenced that steady drop in mortality. And we can’t overlook the fact that 50% of those diagnosed with asthma who are likely taking corticosteroid inhalers along with occasional rescue inhalers are being treated for a condition they do not have.
Practitioner dogma will mean that misdiagnosis and missed diagnoses are not critically assessed and readily thrown out when faced with a patient that continues to suffer. The dogma is so entrenched that the practitioner is much more likely to suspect the patient than the diagnosis.
Next week we will look at self-diagnosis zealotry.