Doctors and researchers recognize that translational medicine (a branch of science that aims to take basic research and translate it into evidence-based medical practice) is important.
We need a similar concept the recognizes the equally important act of translating patient experience and observation into testable hypotheses and, ultimately, clinical care.
If you’re a doctor, you might say “We already do that. We observe patients all the time.” That assumption is flawed.
Doctors, particularly those working in outpatient settings, only see their patients in limited contexts, for short amounts of time, and run limited tests.
And they can only implement “what we know.” Fair. I want evidence-based medicine, too. But how do we gather the evidence we use to make medicine? How do we deal with what isn’t yet known?
In the case of many, many “mystery” chronic illnesses, doctors deal with the unknown through distortion, projection, and neglect. This combination creates a reality distortion field that harms science and the accumulation of new knowledge.
They do this in many ways: gaslighting (“that symptom you are describing can’t happen/isn’t happening”), skipping steps/jumping to conclusions (“I have no idea what is happening, so it must be “anxiety”). And by distorting the observations that they do take on board.
The specificity of “my brain is burning, my neck is stiff” becomes “headache.” “I can’t feel my hands or feet” becomes “pain.” If I overexert myself, “I crash so hard, I can’t lift my head and can barely speak” becomes “fatigue” or worse, “fears exercise.”
The result? A persistent, immovable “nothing to see here.” Researchers don’t get interested, science doesn’t happen, these “problem patients” continue to be problems without solutions. So, the cycle of distortion, projection, and neglect continues.
Put another way: for decades, our interactions with doctors have obscured from sight the very existence of patients like me, rendering us unresearchable, untreatable, inscrutable *by choice.*
I hope one day to break this cycle, not on a case-by-case, diagnosis-by-diagnosis basis, but by deeply reforming the culture and epistemology of medicine.
I don’t know where to start, but transforming the hierarchical, hazing, one-upping culture of medical school might be a good start. Meaningful patient/disabled leadership in the creation of all medical curricula would go a long way.
In the short term, it would be transformative if every doctor started asking their patient this question, right now. You‘d be amazed how quickly we could start mapping the problems:
Because collectively, people living with chronic illnesses know way more about our diseases than...anyone.
