What Not to Say to People With Complex Chronic Illness

southwestforests

Senior Member
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Missouri
Good morning, is 06:06 Monday morning here.
Seen via a Tumblr post.
I've only skimmed through half of both it and the following article it links to, body and brain both not good for serious reading right now.

Medscape Medical News
What Not to Say to People With Complex Chronic Illness
Miriam E. Tucker
March 18, 2025

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft

For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.

To address this, Svetlana Blitshteyn, MD, a neurologist who is the director of Dysautonomia Clinic at Jacobs School of Medicine and Biomedical Sciences, University of Buffalo, and Nancy J. Smyth, PhD, professor and former dean at the School of Social Work, University at Buffalo, both in Buffalo, New York, co-authored a paper entitled Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders. In it, they provided a table of 16 “never words” that clinicians should avoid saying to patients, explanations of why the phrases are problematic, and proposed alternatives for more effective and empathetic communication.

Blitshteyn spoke with Medscape Medical News about the paper. The conversation has been lightly edited for clarity.

Medscape: What was the impetus for writing this paper?

Blitshteyn: The topic of physician-patient relationship and communication strategies to ensure therapeutic relationship is something I thought about writing for a long time, but never got around to it until Smyth contacted me to collaborate on a joint project. She has years of experience with patient engagement, teaching patients how to communicate about invisible illnesses, and helping people with long COVID to communicate and advocate with healthcare professionals and employers. That seemed like a perfect collaboration considering my many years of experience as a neurologist working with patients with complex chronic disorders, such as dysautonomia, ME/CFS, and long COVID.

Who is the target audience for the paper?

Physicians of all specialties and other healthcare practitioners, such as psychologists, physical therapists, social workers, nutritionists, and others.

 

southwestforests

Senior Member
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1,563
Location
Missouri
Part 2: some VERY interesting comments to be seen via clicking on the number next to the reblog arrows.

Samples:

comfyvoid-fae
naamahdarling
Apr 22

Amazing how trusted the medical profession is, despite this being a baseline normal experience for most of my friends (mostly those in USA, but other places too). And why yes those with this experience, they're usually marginalized, what a random coincidence…

You need a medical advocate who has this list conveniently memorized, and knows what is a legal danger to the doctor… right there in the room sometimes.

———————————————

Sometimes I get doctors which just want to get me out the door, so they listen to me just enough to make a random guess, and then talk over anything else I have to say finding reasons it's totally normal.

I've had a follow up doctor astounded that I didn't even get a verification-test done, was just prescribed something. And worse,,, we were confusing each other (as I didn't know the other doctor hadn't verified properly, im not a professional). The follow up listened to me when I said "I'm taking this med for this thing",,, and until I said something about the tests done they didn't realize it had been a guess on the previous doctors part.

I've had doctors confidently ignore me saying "it's definitely this common thing" over the most chronic issues I've had. (What's a differential? Never heard of it /sarc) no matter how much I try to tell them that didn't help my case the last 4 times…

Andctodal… but similarly happening to too many people I know.

———————————————

I say this not as anti-medicine… but to remind that doctors hold a power over you, that they all too often enforce in the system we've created.

That hate, stereotypes, and bigotry exists in doctors as much as other fields.
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rilo-kiley
galaxy-starshine
Jun 4

can't believe doctors are still not grasping "don't tell disabled people they don't look disabled to you"? holy shit this is a fight we have had forever. i'm so glad this paper is acknowledging nuance in how disability looks.

it's so disheartening to have to have a paper explain to not be disparaging, condescending or downright cruel to your patients while we have expressed this for literal decades, but i hope it helps somewhat.

especially with such wildly misunderstood and under researched disabilities like long covid and me/cfs. this is slightly optimistic. i'm willing to be naive in hoping this helps influence how medical professionals treat chronic illness.
#long covid#me/cfs#myalgic encephalomyelitis#chronic fаtiguе ѕуndrоmе#chronic illness#chronically ill#disability#actually disabled#disability and medicine#optimistic science!
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phinarei
dduane
Apr 22

"Don't confuse your Google search to my medical degree."

You're right! My Google search is way more accurate, in depth, and up to date!

Medical schools are teaching SO MUCH outdated information that they should be deeply embarrassed. They also teach straight up lies because a variety of companies pay the CDC a whole lot of money to lie like dogs. "Obesity is a disease!" Really? Then why did the doctors who studied it UNANIMOUSLY say it's NOT? The CDC went against their results because the diet industry paid them to.

There are... so many other details. There's a thing with sugar and another with the beef industry. A lot of what people know about food and how it relates to health is lie. The food pyramid only changed after I was an adult, despite it being known to be incorrect from the beginning. But hey. America grows a FUCK ton of grain and they had to push it somehow.

Let's not forget that a lot of medical schools still teach that black people have thicker skin and feel less pain. A terrifying number of doctors and nurses believe it in fucking 2025.

I don't know about the rest of the world, but if you live in the USA and have a chronic illness, BECOME AN EXPERT. Because not a doctor out there is actually operating on accurate and current information. It ENRAGES me that GPs condescend to people when more often than not, if it isn't a head cold, they don't know what they're talking about. And a good chunk of specialists don't know shit either. And I would know seeing as it was blinding incompetence on the part of MULTUPLE specialists that disabled me.

It's very, VERY nice to see a paper that has a compassionate approach. It would be nicer if I believed that more than a handful of doctors will both read it and learn from it.
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Zebra

Senior Member
Messages
1,144
Location
Northern California
Medscape Medical News
What Not to Say to People With Complex Chronic Illness
Miriam E. Tucker
March 18, 2025

I seriously want to print out multiple copies of this paper and hand them out as needed. The biggest "offender" is my primary care physician, but not able to provide some stellar examples right now.

Another idea?

Arrange this phrasing in the form of a Bingo Card.

Go to medical appointment with Bingo Card of phrases.

Mark up Bingo Card as indicated during the course of the appointment.

Share results with physician. BINGO!
🤣🤣🤣
 

Rufous McKinney

Senior Member
Messages
14,787
The personality types which head to Medical School, (and then somehow manage to get in via the "medical school selection process"....are not the personality types which are very effective at communication and interpersonal relationships.

Of course we love the exception to this general rule.

We get who we send to the school.

Why are we surprised most doctors lack skills in interpersonal relationships; non violent communication; human psychology (in a non clinical setting).
 
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