The label Long Covid has always been bad. I ranted about it years ago.

But what do I know. I'm just a Semanticist.💀

But yes, being specific about what your condition is -
dysautonomia" - much better and more persuasive than the hand-waver category Long Covid.

The difficulty is that covid causes SO MANY longterm issues. If I were to list the ones I've been diagnosed with... I probably have more than 50 different new medical conditions, now

And even that doesn't really work as a description, because it elides the -commonality of experience- that I have with people who also have 50 new medical issues, some of which overlap with mine and some of which don't

It's like the difference between saying I'm a white person, and saying I have ancestors from Germany, Austria, France, and England... And originally from Africa, like everybody

I expect you linguists have a word for this?

It's funny you picked "white" because that's exactly where the danger of these large-scale vague socially loaded categories go.

Words denote categories. It's a bucket we put a bunch of things we take to be similar in.

But you can start lobbing stuff into the bucket from all over, and pretty quick the bucket gets weird.

It's easy to discredit a bucket that's full of 5 billion apparently contradictory things.

wrt to "Long Covid" - there is no such thing as a unified set of "things" that can be called "Long Covid." Nobody - probably no two people - have the same post-infection impact.

So you can discredit it very very very quickly. And people get confused very very quickly.

And that's beside the fact that it uses a quality adjective ("Long") which is just a huge mistake. Implies "Short" Covid and "No Covid" right there in the phrase.

The medical literature prefers "Post-Infection Sequelae" as in "This shit happened after infection".

So basically you are saying that long covid is like cancer

And then you are trying to tell me which terms are used in the medical literature. Or more specifically, that only one term is used. Lol.

long covid is like cancer

Ok; then maybe
cancer :: pancreatic cancer = LC :: SARS2-sequela dysautonomia?

I still feel like this is leaning towards "name symptoms first, local clusters second, and instigating infection / etiology only third as offhandedly as possible"

I feel like nobody is going to argue with:

• I have been fainting and having fatigue
• it's part of a condition called dysautonomia
• I developed dysautonomia after a bout of covid

the way that people push back on

• I have Long COVID

Yes, for dysautonomia specifically, this works pretty well

The difficulty is when you get to the other 2 most common symptoms:

Patient: I have sky high cholesterol that doesn't respond to the typical dietary changes, medication, and exercise

Ordinary PCP doc: Patient is obviously non-compliant and lying about it

Long covid expert doc: This is typical of the vascular damage caused by covid

And:

Pt: I need two weeks to recover from taking a shower, or making a 10 minute phone call, such as to schedule a medical appointment. I need over a month to recover from the appointment itself

PCP: Refer to counseling for anxiety, prescribe psych meds. Tell patient we all get tired sometimes

LC doc: Tell patient what PEM is, referred to occupational therapist with special interest and training in MECFS pacing

I think there may be a difference here, between talking with regular people and talking with doctors.

With regular people, naming the symptoms avoids the political pushback against "long covid". And it sounds legitimately medical, so they go 'Oh, okay".

But doctors are trained to disbelieve long covid, ME/CFS, PEM, and intractable cholesterol / other issues.

What works with regular people may not help with doctors.

oh my goodness

Me: "I'll just use medical terms with HCWs so that we can shortcut htings"

Reality:

doctors are trained to disbelieve long covid, ME/CFS, PEM, and intractable cholesterol / other issues.

What works with regular people may not help with doctors.

So maybe I've been taking a completely wrong tack!

I hate this. There are real problems in the world to solve. Having to waste time and energy on artificial "problems" like this sucks. As someone hinted in a post elsewhere in the thread, it's a broad problem pattern which covers climate change and other subjects too. We societally don't need to have all these problems! We could just face them, and have a good chance of handling the easier ones, and a better chance of the hard ones! So frustrating.

After 30+ years of "mystery" complex chronic illness, I can anecdotally confirm that my likelihood of being disbelieved and dismissed by medical professionals increases in direct proportion to how much medical and/or scientific terminology I use. Still.

The variable isn't the language -- it's the provider. I had to learn a long time ago to treat it like dating: I consciously use phraseology, language, and detailed accounts that I know will elicit flags, and the colors of those flags tells me whether there will be a second date.

This recent article is the one I wish I'd had when I was a thirteen-year-old and had to start developing these strategies from scratch:

whn.global/the-long-covid-stra…

The Long Covid Strategy Guide for Talking to Doctors - WHN

This is the third of a series of posts on Long COVID by David Brasure. See parts 1, 2, 4, 5, 6, 7, and 8. Your appointment was at 2:30.

^WHN