Doctors Know More Than Patients & Chronic Illness Patients Know Our Bodies Best
The Basics
Doctors know more than chronic illness patients about most aspects of human biology and medicine.
Chronic illness patients know more about their own medical history.
Chronic illness patients have an easier time keeping up with the most up to date research on their conditions, especially if they are rare.
In doctor-patient interactions over acute conditions, the doctor has more experience with the condition than the patient.
In doctor-patient interactions over chronic conditions, the patient has more experience with the condition than the doctor.
When chronic illness patients assert their medical knowledge in treatment scenarios they do not believe that they know more about medicine than doctors, only that they know more about their very specific medical situation.
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Doctors Are Generalists
In order to practice medicine doctors must know a massive amount of information about the different systems of the body.
Even "specialists" cover a huge range of illnesses. Dysautonomia, a massive umbrella of conditions is only a tiny fraction of what is covered by a cardiologist.
This is why doctors require so many years of training. When a patient comes in they have to not only know the basics of whatever it is they DO have but they must know about ANYTHING they MIGHT have.
Obviously, not all doctors do this perfectly, as rare disease patients well know, but the fact that they can do it at all is a testament to the massive education undertaking they choose to pursue.
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Chronic Illness Patients Are Hyperspecialists
Chronically ill people approach medical learning from a completely different direction. They start with a hyperspecific diagnosis or symptom set and then learn everything they can relate to their own bodies' dysfunction.
While this can lead to learning about different organ systems, drug classes and so forth, we only learn the things that relate to our own illness and maybe that of a few closely related diagnoses.
Therefore, in a few years, we can learn more about our condition AND all relevant comorbidities, treatments, and pathologies than a doctor does in all their years of training. While the amount learned will depend on a patient's science literacy skills, the potential to become an expert in their illness is high.
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Example: Nurses vs Doctors
A good example of the same knowledge dynamic present in the chronically ill patient-doctor dynamic is that of nurses and doctors.
Doctors and nurses are both trained to insert IVs. But the vast majority of the time this task falls on nurses. In general, if you are in the hospital you would probably prefer a nurse who does IVs all day put your IV in rather than a doctor who hasn't done it in years.
Does this mean that nurses have more medical skills than doctors? Of course not. What it means is that they have more experience with this particular procedure.
Similarly, chronically ill patients are not better at medicine than doctors. They just have more experience dealing with their particular and very unique bodies.
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The Importance Of History
Medicine understands the importance of patient experience. This is why the first part of any doctor's evaluation is taking a patient history.
However, for chronically ill patients, doctors must understand that it is impossible for us to give a full history of our experience.
A normal patient who has had elbow pain for the past 2 weeks can easily tell you everything about that experience.
An EDS patient who has dislocated, swollen, subluxed, and generally injured dozens of joints over numerous years will never be able to accurately describe every injury.
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Rare Diseases & Intersectional Illness
Many chronic illnesses are rare diseases. Rare diseases get less time each in med school and in clinical practice because they are rare.
Additionally, there is less total research on rare diseases. Thus it is easier for a patient to read the entire medical literature on a rare disease. If the disease is rare enough, much of the literature will only be case studies, in other words, someone else's experience. The patient has the best case study of all to draw on, their own illness.
Finally, because of how common it is to have multiple chronic illnesses, even if a patient doesn't have a rare disease they likely represent a very unique population based on the intersection of many diagnoses.
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Experience Creates Expertise
The more experience you have with something the more of an expert you become in it.
With normal illnesses and injuries, a person is experiencing that malfunction for the first time in their life. The doctor meanwhile has seen it at least a handful and likely many times before.
In contrast, with many chronic illnesses especially rare ones, the doctor has never seen this illness or a combination of illnesses before. Whereas the patient has lived with it for years or decades.
Thus the normal pattern of experience and expertise is reversed.
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Chronic Illness Patients Don't Think We Know More Than Doctors
The problem is that when chronic illness patients assert that we know our own bodies best, doctors often interpret this as us saying we know more about medicine than they do. But no chronic illness patient I have ever met actually thinks this.
What chronic illness patients are trying to point out is that we are not like other patients who have a sudden new issue they know nothing about. We have a long-term issue that we have had years or decades to learn everything about. We also have far more experience living in our bodies than we can give you in a medical history. We might not know more about medicine, but we know more about THIS medical problem.
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Learning From Each Other
In a chronically ill patient and doctor interaction there is unique knowledge on both sides of the discussion.
The patient has a detailed history they cannot possibly convey fully to the doctor. They also likely have detailed knowledge about the most up to date research on any rare conditions they may have.
The doctor knows more about the ways that a patient's medications and history might cause medical complications because they have a deeper understanding of how the body works. They can offer suggestions outside of the realm of the patient's hyperspecialized knowledge.
Without communication, the patient's treatment cannot be complete. In comparison to other patients, the doctor must communicate more about what they are doing and why so that the patient can reference the treatments suggested with their knowledge of their own medical history and up to date research on rare illnesses.
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Doctors are intelligent highly educated professionals who swear an oath to try to save lives. Of all the people with authority in our society, I would argue they have the best possible claim to it.
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But doctors are generalists, they are human, and they cannot know everything.
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It is when doctors encounter chronically Ill and rare disease patients, that their authority can become dangerous and destructive.
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Chronically ill patients do not have a few weeks of history a doctor can easily learn, they have years or decades of complex interconnected symptoms from a web of diagnoses.
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Complex Chronic Illness is just that: complex. The standard model of medical knowledge and treatment breaks down in this context.
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Chronic illness patients have so much time to study the particulars of their specific illness, they are hyperspecialists. This doesn't mean we know more than doctors. But it does mean we know more about our specific illness.
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Because our specific illness is not Myalgic Encephalomyelitis or POTS or MCAS or Behcets. It is the unique combination and presentation of diagnoses that occurs only in our bodies. We are our best case study.
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Doctors must learn to relate differently to chronic illness patients. To work under the assumption that not only do they not know everything about their condition, they cannot know everything.
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They must relinquish some of their authority to hold themselves to their oath: first do no harm.
