iiinova — where your digital self keeps evolving

Sue Poncin @sueponcin.com · 26/09/2026

Soooo exciting!!! Hope 🌈🌈🌈

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Sue Poncin @sueponcin.com · 25/09/2026

Six years of denying what we live day in and day out. If I want to take a break from sharing my story, I think of the newly effected and how lonely it is when you aren’t believed, didn’t know Covid could become Long Covid, or you believe it can’t happen to you. My story: www.sueponcin.com/blog

sueponcin.com

Blog — Sue Poncin

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The Sick Times @thesicktimes.org · 23/09/2026

The Telegraph recently published an article about "sickfluencers" titled “How having a disability became cool." We've republished a piece by Julia Doubleday at The Gauntlet pushing back against the article, which she calls "absurd on its face." thesicktimes.org/2026/09/21/c...

A young woman stands by a staircase with a backdrop of tree canopy. She wears a white, high quality mask and has long dark hair. She wears a teal sweatshirt and black pants. The text reads, “The Gauntlet x The Sick Times. COVID-19 — not TikTok — is disabling young women “Sickfluencers” are symptoms of a mass disabling event. By Julia Doubleday.”

“The country is sicker than it’s ever been before” — now why would that be? Six years after COVID-19 hit, four years after the virus has been allowed to run totally rampant without mitigation, the country is sicker than it’s ever been before, but we can’t come up with any reason why that would be other than “women be faking?”

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Sue Poncin @sueponcin.com · 24/09/2026

To my fellow sufferers: thank you for continuing to use your limited energy and cognition to share your Long Covid stories and for encouraging me to share mine. We are making a difference.

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Sue Poncin @sueponcin.com · 22/09/2026

I am so tired of being judged in public places about my dynamic disability because of people like Mitch McConnell that I created a shirt. dynamically-disabled.printify.me

Me wearing a pink Dynamically Disabled by Long Covid tshirt with a red hat, gray scarf, and peach mask.

The back of each Dynamically Disabled tee
Stop the Stigma
of Chromic Illness

“They” need to try harder
“They” are faking
“They” want a handout

“They” is “ME”

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Sue Poncin @sueponcin.com · 22/09/2026

Feeling grateful anytime my book is picked up by someone new. If I can help one person feel less alone after being ripped out of their life. #BookSky a.co/d/00fS2OB8

Cover of my memoir In The Space Between - Finding Rays of Hope Through Long Covid is a photograph of the Tucson desert of rainbow with saguaros my brother in law took in his yard with the title written in black in front of the clouds at the top.

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connectivedigest.substack.com

Hope looks like MIT researching complex chronic illnesses 🌈 2002 My mom Months of ER and dr visits Is she depressed? Wheeled into to a seasoned endocrinologist’s office Sees dark lines in her fingernails Bam ~ diagnosis Addisons Disease 3 weeks from adrenal failure Thank you Sam Rhodehamel

MIT Launches New Study to Investigate Vascular Dysfunction

How Fingernails Could Reveal Clues of the Microvascular in Complex Chronic Illness

Hope looks like reading a book to feel less alone 🌈 Madelleine Muller sums up how I feel living with Long Covid: “If healthy person jumped into my body, they would have an immediate panic attack and believe they were about to die because that’s what it feels like.”

Cover of the book
What is Myalgic Encephalomyelitis Like?
Patient & Caregiver Perspectives

The cover art looks like blue, green, and yellow water flowing together with the title in white print on a dark blue rectangular strip near the top.

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Math is everywhere 🍕🍕

Sue Poncin @sueponcin.com · 15/09/2026

Yes. And. Them: People seem more run down and tired….. Me: It’s Long Covid, it’s been Long Covid for 6 years.

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Hope looks like positive trial results for Long Covid 🌈🌈

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Jenka @jenka.bsky.social · 13/09/2026

“Disability activists warned for years that this would be the outcome of allowing COVID to spread unmitigated. Now that it’s time to pay the piper, the state and its media allies are working desperately to sever the connection between COVID and its consequences.” open.substack.com/pub/thegaunt...

open.substack.com

COVID is disabling young women, not Tiktok

“Sickfluencers” are merely symptoms of a mass disabling event

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Sue Poncin @sueponcin.com · 14/09/2026

One infection = Disabled for 5.75 years and counting….

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Reposted by Sue Poncin

Plague Poems @plaguepoems.bsky.social · 08/09/2026

A recent study of 154 singers found that Covid had a lasting impact on their vocal health, with 53% reporting persistent vocal changes, and though it may be that singers are more likely to notice such changes that doesn’t mean this has only happened to them.

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Peter Morley ♿️ @petermorley.bsky.social · 07/09/2026

If you live in Kentucky and have healthcare or Social Security concerns, please contact me directly via DM including your full name, city, & ZIP Code & I will share your story with your two senators next week when I am in DC. Thank you so much!

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Sue Poncin @sueponcin.com · 08/09/2026

One event changes your life and you don’t give up. A good reminder on the dark days. Justin Dodge lost his leg and interviews Amy Van Dyken after being paralyzed. open.spotify.com/episode/37fZ...

open.spotify.com

Tell Me I Can’t, I’ll Show You I Will | Heavy Victory Ep 2

Heavy Victory · Episode

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Reference Books and Podcasts — Sue Poncin

Being ripped out of my life by a virus left me lost and floating with Long Covid. Other people’s stories put words to what I couldn’t describe. These authors saved my sanity and inspired me to share my own story to pay it forward. I hope I help at least one person feel less alone.

sueponcin.com

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I’m not an elder but I understand and I get it. Acceptance of your altered life and living with crashes and pain is exhausting mentally and physically. 🫂

Good enough. Accidents are rare but I still have trouble telling when I’m done. I joke it’s like wiping a two year old 😫

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My first two years of LC this happened to me. A colonoscopy diagnosed Celiac disease. I’m sure you’ve already been tested for it but thought I’d mention it. I am still in awe how one infection can trigger so much dysfunction.

Why do advocates continue to share their Long Covid stories? ⬇️ Because no one else is. AND If we can spare one person from suffering our fate, being ripped out of your life & becoming disabled, it is worth it.

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Long Covid SOS @longcovidsos.bsky.social · 06/09/2026

Labor Day = Union Appreciation Day The teachers’ union and retirement system saved us from bankruptcy when I became disabled by Long Covid.

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Reposted by Sue Poncin

Yet another wave of COVID and prevention still isn’t being taken seriously. Until prevention is properly prioritised, we have to take responsibility for our own risk reduction. That means continuing with the practical precautions we know work, even if those around us have stopped taking them.

Infographic from Long Covid SOS titled “THE ONLY WAY TO PREVENT LONG COVID IS TO AVOID COVID”. It lists five ways to reduce the risk of catching and spreading Covid:
Mask icon and text “Wear the best mask you can. Wearing a good mask like an N95 or better when in public will give you the best protection”
Home icon and text “Stay home and isolate if ill. If you feel unwell isolate yourself from others until you are feeling better and testing negative”
Unwell icon and text “Test if you have symptoms Symptoms of Covid? Isolate and test. Repeat test while symptomatic and mask around others”
Ventilation icon and text “Ventilate or meet outside. Clean air is the best way to prevent spreading and catching Covid so make sure fresh air is circulating”
Long Covid still has no cure
Medical icon and text “There is no cure for Long Covid so the best way to avoid it is to take steps to avoid catching Covid”
The graphic uses teal panels with white text and orange-and-white circular icons. Long Covid SOS branding appears at the bottom right and contact information FOR MORE INFORMATION OR HELP WITH LONG COVID PLEASE VISIT OUR WEBSITE WWW.LONGCOVIDSOS.ORG on left.

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Missing your kids’ games is awful. Losing your career is awful. Being disabled is awful. I guess awful is relative to what you know. Long Covid puts suffering in perspective.

Sue Poncin @sueponcin.com · 05/09/2026

My reaction if someone tries to take my Diet Coke.

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Sue Poncin @sueponcin.com · 04/09/2026

Get your immunizations. Let me be the cautionary tale: I was not vaccinated. One infection = 5+ years disabled. So many aspects of my life lost. (Infected Jan 2021 just weeks before the vaccine was available to general public)

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Reposted by Sue Poncin

Andrew Hinton 😷🧡 @andrewhinton.bsky.social · 02/09/2026

"Several groups have shown that antibodies from people with long COVID make mice ill…[and] In a study published in May, an antibody called immunoglobulin G (IgG) taken from people with long COVID conferred hypersensitivity to pain when injected into mice" www.nature.com/articles/d4158...

nature.com

When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes

Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.

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Sue Poncin @sueponcin.com · 03/09/2026

Can someone please absolve me of my guilt and shame for getting Long Covid? Please! No matter what I tell myself and no matter how I rationalize that it’s not my fault, I feel like a failure.

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Sue Poncin @sueponcin.com · 01/09/2026

Two of my other favorite quotes:

Sue Poncin @sueponcin.com · 01/09/2026

“Long Covid could prove to be a knottier, more elusive than HIV/AIDS.” A 1000-piece puzzle, the pieces had the same image, rotated 90 degrees, on the back 😱 “That’s like long Covid,” Henrich said. “It’s not m that we’re looking at one picture; we’re looking at multiple pictures that offset.”

smithsonianmag.com

For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief

Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers

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Sue Poncin @sueponcin.com · 31/08/2026

As a person who has donated bio samples to the Reverse-LC trial, I couldn’t not be more thrilled about the sharing of resources. Hope looks like more researchers, more ideas, quicker solutions 🌈

The bio sample tray sent to the lab with my cerebrospinal fluid. On top of a hospital rolling table is a female hands holding a two inch long tube with a white tray under it with rows of small tubes with green tops.

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Long Covid The Answers @longcovidanswers.bsky.social · 30/08/2026

ISLC-PAIS 2026 Young Investigator Award Huge congratulations to Dr. @DaniBeckman on receiving the ISLC-PAIS 2026 Young Investigator Award, recognition of her outstanding research into Long COVID and post-acute infection syndromes. #ISLCPAIS #LongCOVID #PAIS #MEcfs

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Billy Hanlon @bhanlon15.bsky.social · 31/08/2026

Smithsonian Magazine: 'For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief' 'Long Covid saps the strength and vitality of patients, who have little recourse to fight it...' www.smithsonianmag.com/innovation/m...

smithsonianmag.com

For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief

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Sue Poncin @sueponcin.com · 29/08/2026

PTSD is very real with chronic illness. Erin Rackham shares her experience of inhabiting a body that has betrayed her. If you want a detailed account of how Long Covid can wreck a body and a brain, check out my memoir. Link in bio. www.tiktok.com/t/ZP8vpcWte/

tiktok.com

I’m grateful and lucky to be in the “post”-trauma from my most severe days with Long COVID, I know. But I still think it’s worth talking about the process of reinhabiting my body and learning to feel ...

TikTok video by Erin Rackham, PhD

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Sue Poncin @sueponcin.com · 28/08/2026

“There’s always something missing-that’s the deepest truth in my life.” One covid infection ripped me out of my life over five years ago. I’ve worked to grieve what I’ve lost but I still have this persistent ache. Kate Bowler gets it. I had to get my highlighter and pen out reading Joyful Anyway.

The cover of Joyful Anyway by Kate Bowler. “Joyful” is hot pink metallic balloons and “Anyway” is gold metallic balloons that are falling across the page with the an and y deflating.

Page 74 of the book with a pink highlighter and black pen laid in the middle. I highlighted the top paragraph writing in pink “all of this” and then highlighted the bottom paragraph as well.

Sue Poncin @sueponcin.com · 26/08/2026

Thank you for testing! And for going home. The only way to prevent Long Covid is to not get Covid. Hopefully you saved someone from my fate. I never thought 5.5 years ago one virus would make me a cautionary tale. But here I am disabled. Still.

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Plague Poems @plaguepoems.bsky.social · 25/08/2026

Are there some deaths that provoke an outpouring of grief? Yes, there are some deaths that provoke an outpouring of grief. For in this death filled era we are all of us so filled with grief that we must take any opportunity to pour some of it out.

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Sue Poncin @sueponcin.com · 26/08/2026

One again, grief and Long Covid go hand in hand. “It’s not a problem that can be solved, it’s a condition in which you have to find a way to endure.” And you never know how you’ll feel day to day, sometimes hour to hour. An excerpt from All There Is with Anderson Cooper.

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C.H. Romatowski @chromatowski.bsky.social · 21/08/2026

The org Got Long Covid?, in conjunction with the Los Angeles Department of Public Health, is running a survey on Long Covid experiences to inform LA’s LC response! Please share with LA friends! usc.qualtrics.com/jfe/form/SV_...

This survey is for residents of LA County impacted by Long COVID + related conditions, including:
• People living with Long COVID
• Caregivers + parents to adults or children with
Long COVID*
• Healthcare providers and researchers
• Allies, advocates and community organizers

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Sue Poncin @sueponcin.com · 21/08/2026

Please test if you are sick. Covid may be “just a cold” to you but it could steal someone else’s health and livelihood for the unforeseen future. I never thought I’d be a cautionary tale. But I am. My story of going from teaching Calculus to struggling to count by 2’s: a.co/d/0btEdLAe

a.co

Amazon.com

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COVID is ‘growing’ in nearly every state, CDC reports. Here’s where levels are highest

The CDC: “COVID-19 infections are growing or likely growing in 50 states.” No states are seeing cases decline. Despite the trend, the CDC says severe cases are still pretty rare. But Long Covid cases are not. Test to protect others. You don’t want to be me. One infection = 5.5 yrs disabled

wgntv.com

Don’t be surprised if you start hearing some more coughing in the next few weeks. COVID-19 is once again on the rise in nearly every corner of the U.S.

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A good reminder! If you or someone you know has faced a life altering event, I hope my Long Covid experience can help. a.co/d/0ayBbPeB

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Thank you for the encouragement!

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⬇️ applies to chronic illness & disabled people as well. So much so that I made a tshirt to spread awareness. dynamically-disabled.printify.me