Sue Poncin
@sueponcin.com
After Jan 2021: #Disabled by Long COVID & #BookSky author #LongCOVID memoir
Before Jan 2021: overachiever, #MathSky Calculus teacher, Mom Uber driver
www.sueponcin.com
In The Space Between: https://a.co/d/0fkSZMd
Before Jan 2021: overachiever, #MathSky Calculus teacher, Mom Uber driver
www.sueponcin.com
In The Space Between: https://a.co/d/0fkSZMd
Pinned
Sue Poncin
@sueponcin.com
· Mar 23
Five years later, we are not alone.
#LongCovid damage is nothing short of baffling.
@sanders.senate.gov
@duckworth.senate.gov
@kaine.senate.gov
Don’t forget about us.
Thank you @nbcchicago.com for helping #LongCovidAwareness by sharing our story.
nbcchicago.app.link/s4hgLRPnXRb
#LongCovid damage is nothing short of baffling.
@sanders.senate.gov
@duckworth.senate.gov
@kaine.senate.gov
Don’t forget about us.
Thank you @nbcchicago.com for helping #LongCovidAwareness by sharing our story.
nbcchicago.app.link/s4hgLRPnXRb
“imagine a disabled future where it’s possible to allow our disabled bodyminds to exist as they are without reference to an idealized past or “cured” future.”
🌈🌈
From surviving to living….
With a dynamic disability.
🌈🌈
From surviving to living….
With a dynamic disability.
For anyone who is disabled in any way (for me it's a combo of Long COVID and very late diagnosed autistic burnout) I hope you will read this. The concept of crip time is truly radical and offers a new way to consider how to accept and embrace our unique bodyminds:
open.substack.com/pub/julialee...
open.substack.com/pub/julialee...
The Revolutionary Nature of Crip Time
wherein our heroine begins to embrace her bodymind's actual needs in time and space and finds grace and freedom therein
open.substack.com
December 17, 2025 at 4:50 AM
“imagine a disabled future where it’s possible to allow our disabled bodyminds to exist as they are without reference to an idealized past or “cured” future.”
🌈🌈
From surviving to living….
With a dynamic disability.
🌈🌈
From surviving to living….
With a dynamic disability.
Long Covid impacts three out of seven members of my family:
My brother, my mom, myself
Interesting if this statistically tracks with the number of infected who have Long Covid and/or is primarily a genetic link
www.unisa.edu.au/media-centre...
My brother, my mom, myself
Interesting if this statistically tracks with the number of infected who have Long Covid and/or is primarily a genetic link
www.unisa.edu.au/media-centre...
Who is more likely to get long COVID? New study uncovers genetic drivers behind the disease
Australian scientists have identified the key genetic drivers behind long COVID, revealing why some people are more likely to be affected.
www.unisa.edu.au
December 16, 2025 at 1:52 PM
Long Covid impacts three out of seven members of my family:
My brother, my mom, myself
Interesting if this statistically tracks with the number of infected who have Long Covid and/or is primarily a genetic link
www.unisa.edu.au/media-centre...
My brother, my mom, myself
Interesting if this statistically tracks with the number of infected who have Long Covid and/or is primarily a genetic link
www.unisa.edu.au/media-centre...
December 16, 2025 at 1:39 PM
This is why Long Covid is a dynamic disability:
“A wide array of symptoms including fatigue, brain fog, shortness of breath, exercise intolerance, and cognitive decline for months or even years.”
medicalxpress.com/news/2025-12...
“A wide array of symptoms including fatigue, brain fog, shortness of breath, exercise intolerance, and cognitive decline for months or even years.”
medicalxpress.com/news/2025-12...
Decoding long COVID: Investigators reveal why the body keeps fighting the war
A new study from investigators at Beth Israel Deaconess Medical Center (BIDMC) sheds light on why some people never fully recover from COVID-19.
medicalxpress.com
December 15, 2025 at 6:23 PM
This is why Long Covid is a dynamic disability:
“A wide array of symptoms including fatigue, brain fog, shortness of breath, exercise intolerance, and cognitive decline for months or even years.”
medicalxpress.com/news/2025-12...
“A wide array of symptoms including fatigue, brain fog, shortness of breath, exercise intolerance, and cognitive decline for months or even years.”
medicalxpress.com/news/2025-12...
Dynamic Disability: a condition where symptoms fluctuate in severity and impact over time, causing a person's abilities to change.
Spread awareness to take away the embarrassment & Stop the stigma of chronic illness - there is no “try harder”
Inspo: Baylen Dupree
dynamically-disabled.printify.me
Spread awareness to take away the embarrassment & Stop the stigma of chronic illness - there is no “try harder”
Inspo: Baylen Dupree
dynamically-disabled.printify.me
December 11, 2025 at 4:05 AM
Dynamic Disability: a condition where symptoms fluctuate in severity and impact over time, causing a person's abilities to change.
Spread awareness to take away the embarrassment & Stop the stigma of chronic illness - there is no “try harder”
Inspo: Baylen Dupree
dynamically-disabled.printify.me
Spread awareness to take away the embarrassment & Stop the stigma of chronic illness - there is no “try harder”
Inspo: Baylen Dupree
dynamically-disabled.printify.me
Hope looks like………
A half a billion euros 🌈🌈🌈
“The German government aims to fund research into a wide variety of post-infectious diseases, including Long COVID and ME/CFS.“
A half a billion euros 🌈🌈🌈
“The German government aims to fund research into a wide variety of post-infectious diseases, including Long COVID and ME/CFS.“
Nature: 'Long-COVID research just got a big funding boost: will it find new treatments?'
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'
By Michael Marshall
www.nature.com/articles/d41...
Long-COVID research just got a big funding boost: will it find new treatments?
The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.
www.nature.com
December 9, 2025 at 2:08 AM
Hope looks like………
A half a billion euros 🌈🌈🌈
“The German government aims to fund research into a wide variety of post-infectious diseases, including Long COVID and ME/CFS.“
A half a billion euros 🌈🌈🌈
“The German government aims to fund research into a wide variety of post-infectious diseases, including Long COVID and ME/CFS.“
Still true today….
On this day in COVID history, December 6, 2021:
We’re Not at Endemicity Yet
Source: The Atlantic
https://www.theatlantic.com/health/archive/2021/12/covid-is-not-endemic-yet-and-may-not-be-for-a-long-time/620914/
We’re Not at Endemicity Yet
Source: The Atlantic
https://www.theatlantic.com/health/archive/2021/12/covid-is-not-endemic-yet-and-may-not-be-for-a-long-time/620914/
December 7, 2025 at 4:27 AM
Still true today….
“Instead of telling patients ‘I don’t know what’s wrong,’ we should be saying, ‘This meets the criteria for Long Covid.’”
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
December 6, 2025 at 1:09 AM
“Instead of telling patients ‘I don’t know what’s wrong,’ we should be saying, ‘This meets the criteria for Long Covid.’”
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is.
Plus offering CEUs.
www.aama-ntl.org/docs/default...
Long Covid ripped out of my life suddenly and left me isolated and terrified. Each Tuesday, these ladies have my back: anger, disbelief, laughs, tears, “Ha! Yep! Me too!”
If you suffer from any chronic illness, Messy podcast is the home you didn’t know you needed. You are not alone 💕
If you suffer from any chronic illness, Messy podcast is the home you didn’t know you needed. You are not alone 💕
December 5, 2025 at 7:18 AM
Long Covid ripped out of my life suddenly and left me isolated and terrified. Each Tuesday, these ladies have my back: anger, disbelief, laughs, tears, “Ha! Yep! Me too!”
If you suffer from any chronic illness, Messy podcast is the home you didn’t know you needed. You are not alone 💕
If you suffer from any chronic illness, Messy podcast is the home you didn’t know you needed. You are not alone 💕
“Long COVID is real. It's wrecking lives.”
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
“I haven’t thought about COVID in a long time.”
For a lot of people, that’s the whole story: if they bounced back, it feels like the crisis is over. But for those living with Long COVID, life never went back to normal, and that gap between realities is its own kind of wound.
For a lot of people, that’s the whole story: if they bounced back, it feels like the crisis is over. But for those living with Long COVID, life never went back to normal, and that gap between realities is its own kind of wound.
![Visual: Black background; a white 3M N95 mask with yellow straps appears at the lower left.
Text:
whn.global (top left) • whn.global/long-covid-my-brother-in-law (top right)
For people living with Long COVID, that gap is brutal. They’re “watching people [they] love act like none of it matters, while [their] life is barely functioning.”
Brasure links this to “identity-protective cognition”: we believe what keeps us in good standing with our community. Doctors and friends “folded” not because they don’t care, but because they’re tired, want normal, and are protecting their place in the tribe.
But, as he writes, “reality doesn’t care about tribes.”
Footer: The World Health Network is a network devoted to global compassion—working together to inspire collective action through science for a safer, healthier world.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:jj3szqwfglmbzrzuj7m6rhhz/bafkreiek3qmplnwpzvhes3uceqrteac563y7xrkbsg7y5a5rhtr2axmldq@jpeg)
December 5, 2025 at 12:41 AM
“Long COVID is real. It's wrecking lives.”
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate.
My story: www.sueponcin.com
When asked about clinical trial participation, Morris added, “Unless you’ve gone through what I’ve gone through, you don’t understand what it’s like to be willing to try anything once, if it helps. And if it doesn’t, then [you] learn something from it.”
I couldn’t agree more!
I couldn’t agree more!
UT Health San Antonio: 'New center launches with focus on chronic infectious diseases'
'The University of Texas at San Antonio marked the launch of its new Center for Chronic Infectious Diseases..an inaugural symposium highlighting research on..long COVID...'
news.uthscsa.edu/new-center-l...
'The University of Texas at San Antonio marked the launch of its new Center for Chronic Infectious Diseases..an inaugural symposium highlighting research on..long COVID...'
news.uthscsa.edu/new-center-l...
New center launches with focus on chronic infectious diseases - UT Health San Antonio
The University of Texas at San Antonio marked the launch of its new Center for Chronic Infectious Diseases on Nov. 14 with an inaugural symposium highlighting research on post-acute sequelae of SARS-C...
news.uthscsa.edu
December 4, 2025 at 9:11 PM
When asked about clinical trial participation, Morris added, “Unless you’ve gone through what I’ve gone through, you don’t understand what it’s like to be willing to try anything once, if it helps. And if it doesn’t, then [you] learn something from it.”
I couldn’t agree more!
I couldn’t agree more!
On my way to do my part to help find answers by participating in the Reverse-LC trial at University of Minnesota.
Long Covid stole so much of my life, it feels good to do something positive.
Long Covid stole so much of my life, it feels good to do something positive.
December 4, 2025 at 5:01 PM
On my way to do my part to help find answers by participating in the Reverse-LC trial at University of Minnesota.
Long Covid stole so much of my life, it feels good to do something positive.
Long Covid stole so much of my life, it feels good to do something positive.
Keeping eyes and ears open for a Midwest version. Anything to help scientists and researchers find answers to the Long Covid mystery.
7) Another pilot study collects postmortem tissue. It created the logistics for rapid autopsies of individuals who are being followed with long COVID in the Washington-Maryland-Virginia area.
Link:
Link:
Development of a long Covid postmortem tissue bank with pathological & molecular analyses - PolyBio Research Foundation
Project summary:A pilot study to develop the logistics for rapid autopsy of individuals who are being followed with long COVID in...
polybio.org
November 24, 2025 at 12:43 AM
Keeping eyes and ears open for a Midwest version. Anything to help scientists and researchers find answers to the Long Covid mystery.
Is it just me or do other Long Covid suffers read headlines like this one and think:
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
November 22, 2025 at 4:03 AM
Is it just me or do other Long Covid suffers read headlines like this one and think:
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
Long Covid and Neurofeedback - an essay on my blog describing my last year of therapy.
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
November 22, 2025 at 12:37 AM
Long Covid and Neurofeedback - an essay on my blog describing my last year of therapy.
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
Anyone whose handle is @sfdirewolf.bsky.social is a BAMF.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
“Don’t let the bastards grind you down. I love you all.”
November 15, 2025 at 3:28 PM
Anyone whose handle is @sfdirewolf.bsky.social is a BAMF.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
My fellow chronic illness & Long Covid sufferers who don’t have the words to describe the mind numbing fatigue - listen to Lance’s description in Nevertheless, Persisting with Amy Blackstone. (starts at 7:15)
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
November 15, 2025 at 3:20 PM
My fellow chronic illness & Long Covid sufferers who don’t have the words to describe the mind numbing fatigue - listen to Lance’s description in Nevertheless, Persisting with Amy Blackstone. (starts at 7:15)
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Patricia Lockwood wondered if her Long Covid book was “the book that no one wants to read. This is the time no one wants to read about.”
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
In The Space Between: Finding Rays Of Hope Through Long COVID.: Poncin, Sue: 9798990085206: Amazon.com: Books
In The Space Between: Finding Rays Of Hope Through Long COVID. [Poncin, Sue] on Amazon.com. *FREE* shipping on qualifying offers. In The Space Between: Finding Rays Of Hope Through Long COVID.
a.co
November 15, 2025 at 3:39 AM
Patricia Lockwood wondered if her Long Covid book was “the book that no one wants to read. This is the time no one wants to read about.”
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
More hope for Long Covid🌈 from Stellenbosch University;
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
Scientists reveal another piece in Long COVID puzzle
New study reveals a structural association between circulating microclots and neutrophil extracellular traps (NETs) in patients with Long COVID. When dysregulated, this interaction may become pathogen...
www.su.ac.za
November 15, 2025 at 1:46 AM
More hope for Long Covid🌈 from Stellenbosch University;
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
Internet Gold!
Take this man to Chez Paul. He and his brother would like to dine.
Take this man to Chez Paul. He and his brother would like to dine.
What's from Chicago, hates Illinois Nazis, and is holy as fuck?
It's the Pope in 1982.
It's the Pope in 1982.
November 13, 2025 at 2:17 AM
Internet Gold!
Take this man to Chez Paul. He and his brother would like to dine.
Take this man to Chez Paul. He and his brother would like to dine.
Reverse-LC trial at Univ. Of Minnesota four month visit ☑️
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
November 11, 2025 at 8:56 PM
Reverse-LC trial at Univ. Of Minnesota four month visit ☑️
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
My conundrum single day with Long Covid ⬇️
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
On Hello Computer newsletter this week: "How am I doing after 18 months of Long Covid or ME/CFS?"
Read and sign up: pete.news/hellocompute...
#HelloComputer #MECFS
Read and sign up: pete.news/hellocompute...
#HelloComputer #MECFS
ME/CFS Update
How am I doing after 18 months of Long Covid or ME/CFS?
pete.news
November 10, 2025 at 1:23 PM
My conundrum single day with Long Covid ⬇️
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“This is the book that no one wants to read, right? This is the time no one wants to read about. This is the thing we were all warned against.
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
November 9, 2025 at 9:47 PM
“This is the book that no one wants to read, right? This is the time no one wants to read about. This is the thing we were all warned against.
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
Reposted by Sue Poncin
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
November 8, 2025 at 4:44 PM
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
Perhaps my state & city as well as and our National departments of health will follow Durham County’s lead on educating & spreading awareness of Long Covid.
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
Long COVID includes a wide range of symptoms and can affect anyone, no matter your age or other health conditions. Learn more, and prevent #LongCOVID by preventing COVID-19!
November 8, 2025 at 7:06 PM
Perhaps my state & city as well as and our National departments of health will follow Durham County’s lead on educating & spreading awareness of Long Covid.
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info