Links: What gets attention

[sonia]

Risk Literacy 2 minute test. It said I understand risk/odds. Yay! I still remember the Combinatorics class I took in college with great fondness.

“You Are Putting on a Good Show” by The Sensitive Neurologist, Andrea Diedrich, MD.

I believe this phrase acknowledges their struggle and recognizes their accomplishment at living with their condition. It uplifts rather than diminishes their successes, no matter how small. The hidden meanings are not pejorative. “You are putting on a good show” says, “I am proud of you. I believe you, and I believe in you.”

Unlocking the Mysteries of Long COVID by Meghan O'Rourke.

Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. [...] “These are doctors that we work alongside,” Chen told me. “And we know that these aren’t patients that are faking it. If my fellow doctor, whom I work with closely, is telling me that they can’t get through the day because they can’t think straight, I’m going to believe that.”

As someone who works with people with chronic illness, and has my own share of symptoms that Western medicine ignores, I find that quote about "the doctors aren't lying about mysterious symptoms" simply infuriating. But at least they're finally paying attention.

Comments

[radiantfracture]

I took the test and did well! But I was primed to pay closer attention by your mention of combinatorics.

[sonia]

Yay! I think paying attention is the key, no matter how we get there.

[conuly]

As someone who works with people with chronic illness, and has my own share of symptoms that Western medicine ignores, I find that quote about "the doctors aren't lying about mysterious symptoms" simply infuriating. But at least they're finally paying attention.

Ditto on the infuriating aspect of the quote.

[sonia]

Yeah. I'm hoping that some treatments emerge that are useful for chronic all-sorts-of-things, but that won't make up for ignoring people (mostly women) for so long.

[redbird]

I got 2/2 right on the "risk literacy" quiz; I hope I would do as well with something more emotionally loaded than the questions there.

[sonia]

Yay! I do think emotions have a place in risk assessment, hopefully consciously taken into account.

Now I'm really curious about their overall survey results, given the small skewed sample I'm seeing here.

[silveradept]

I received a "highest result possible" from the risk assessment test, but I felt very conscious of the fact that I could take my time and reason through everything and then provide an answer that was either correct or something close to it, since there was never a revelation of what the answers were, as best as I saw. In a situation where I didn't have time, or I was trying to make a decision in a stressful situation, or with incomplete information, I feel like I would have done much worse in correct risk assessment.

I was also struck by the "well, if doctors are reporting this, then we're going to take it seriously from the start" as close to an admission that doctors otherwise don't believe their patients as I have heard in quite some time from people who aren't being actively disbelieved by their doctors.

[sonia]

Yeah, I think they're assessing best case risk management, and I'm guessing many people 1) don't stop to think even in low-pressure situations and/or 2) don't have the skills to figure out this kind of problem.

... yeah, about the doctors. "If we don't understand it and can't fix it, it doesn't exist." Bizarre, right? I hate that "You're imagining things" is so ready to hand as a dismissal.

[silveradept]

I had to check on the last one I did to make sure I was answering the question asked.

I see a lot of narratives from people where "you could lose some weight" is the dismissal and nothing can penetrate it.