Discussion
I have Symptom X. Symptom X is a very likely predictor of Condition A, so much that Condition A is often presumed diagnosed *only* with direct observation of Symptom X. I observed Symptom X thirteen months ago.
I also have Symptom Y. When we know Condition A, Symptom Y is clearly established to be a direct result of Condition A in many cases. But Symptom Y also results from many other causes.
@yvonnezlam do they say why they think there's evidence against it?
@yvonnezlam (I just find that a useful question to force clarity)
@grimalkina My friend reports that they say, "You have a lot going on, but I don't think it's Complex Condition."
Nevertheless, the probability of Condition A given BOTH Symptom Y and Symptom Y is, well. Different from the probability of Condition A given only Symptom Y.
Want to guess how many separate different doctors appointments it took to get from my raising Symptom X, while having an appointment about Symptom Y, to get to Condition A?
@JeffGrigg oh yes thanks!
@JeffGrigg the word "symptom" stopped being meaningful as some point writing those lol
It took EIGHT appointments, over $1000 (that's after insurance), and loads of time and stress.
And I raised the thing we needed to look at in the very first appointment and every subsequent one.
Now, I don't dispute the need to not leap to assumptions. Perhaps there really are many drivers of Symptom Y.
But not even *considering* Condition A? A real failure.
Doctors' appointments are subject to anchoring effects, perhaps worse than any single high-stakes reasoning moment I've ever seen.
This sounds eerily like my daughter's current & ongoing experience with US health care.
@Benhm3 I hope she gets care :(
Famously, doctors struggle with base rates and similar cognitive biases around likelihood
(
see: https://www.researchgate.net/publication/247373134_Physicians_neglect_base_rates_and_it_matters
or
https://onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2753.2001.00284.x
)
Really, we all struggle with base rates
We are trained to think about population level averages. Our minds like to anchor on large known patterns.
But most moments of detective work are about winnowing through conditional probabilities
@grimalkina Thanks for that reminder about anchoring. It helps me feel a little better about the doctor who neglected to read my history, because absent that history, her advice was for the most likely remedy for causes of Symptom X: exercise, bronchodilation; useless for me.
I have been going back through the last two years of my experience here and trying to write something out of it. A few large points are resolving
In order to achieve the maximal efficacy of medical intervention, you absolutely need to solve diagnostic delays. Diagnostic delays are increasingly costly the more efficacious our early interventions are. If you miss the boat, and the boat could take you to an entirely different universe of outcomes, that miss matters tremendously.
The price to get care is not just money. It is the energy and ability to fight with evidence. Who is capable of being as much of a pitbull as I am about things? It shouldn't take relentlessly going back again and again and again to finally get into a room with a basic diagnostic inventory. And it wasn't a failure of information: *I* knew the diagnostic inventory eight months before someone was finally willing to note two things together in my chart.
Come. the fuck. on.
This is ONE example. I feel some I dunno, hesitation saying this because I have that gaslighting bullshit residue in the back of my throat, but we have spent thousands of dollars on my health appointments and you know what, we *needed to* for me to achieve an actual quality standard of care.
My wife is a TENURED BIOLOGY PROFESSOR who TEACHES EVERY PREMED student in one of the best medical systems in the country and that's what we get.
and you know, I did it.
There is a window of intervention for what I'm going through, and I got started on treatment during that window.
Past that window, patients' chances of changing the long-term course of their condition ARE. CUT. IN. HALF.
The length of time of that window? We don't know for certain, but the range looks roughly similar to the length of time THESE things take:
- how long it takes most women with these symptoms to get referred to a specialist in the first place
- around the length of time you might spend battling two denials + appeals of a medication (based on my personal experience)
- the time it takes your favorite local psychologist to pitch, draft and publish a book
@grimalkina shiiiiiit, I'm so sorry. Ugh.
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@grimalkina I have a friend who is being told by doctors "you have a lot of awful symptoms, but you don't have Complex Condition That We Have Not Tried to Diagnose."
Me: "Isn't having a lot of awful symptoms in itself a complex condition? Even if it's not the one you think you might have that they don't think you do so they aren't trying to diagnose?"