Sue Poncin

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

“For most healthy young adults, these viruses don't really pose a threat, unless you're challenged with things like COVID.” I lived my first 46 years believing chronic illness didn’t pose a threat to me. And then COVID came for me. www.npr.org/2026/10/23/n...

Math is Everywhere 📐

Washington Post: 'Want to reduce chronic diseases? Invest in vaccines.' 'A new study shows that 1 in 8 cancers worldwide are due to infections.' 'Long covid and Lyme disease are further examples of how the consequences of infectious diseases can persist...' www.washingtonpost.com/opinions/202...

Losing a career Losing an identity Losing the ability to participate in life Chronic illness is a thief. And unfortunately no one is immune. www.bbc.com/sport/athlet...

Hope is seeing @thephysicsgirl.bsky.social upright and moving 🌈🌈🌈 Functioning at 30-40% is a daily mental and physical grind. A reminder that a picture doesn’t tell the whole story.

As a listener of MeSsy from the beginning, I went from over the moon that Christina Applegate was feeling well enough to be back on the podcast to heartbroken for her in minutes. Thank you @broadwaybabyto.bsky.social for putting words to the depth of how I felt hearing her share her story.

Taking a break from posting about Long Covid to say LFG Chicago White Sox!

This ⬇️

New York Knicks center Karl-Anthony Towns, who tragically lost his 58-year-old mum and several family members to COVID-19 complications, continues advocating for vaccination. “I have asthma,” Towns said, highlighting his “high-risk status” while raising awareness of the non-mRNA NUVAXOVID vaccine.

Tri-City Herald (WA): 'Guest Opinion: COVID-19‘s long-haulers are suffering and need our support' 'our elected officials need to come together in a bipartisan effort to help these unlucky few whose bodies were negatively affected long-term.' amp.tri-cityherald.com/opinion/opn-...

Hope for Long Covid 🌈🌈 “MMT can suppress chronic neuroinflammation, downregulate reactive microglial activation, and support mitochondrial bioenergetics, biological pathways known to be compromised in post-viral encephalopathies.”

“Imaging findings revealed lower overall cerebral blood flow among participants with post-COVID condition.” Left postcentral gyrus - touch, pain, right side body position Right middle cingulate cortex - turns decisions into physical movements What Long Covid has done to me. Every single day.

Covid Infections Can’t Be Causing Long Term Health Problems, Because Look Over There At The Squirrel

A Pause on Hope: Resting from recovery www.sueponcin.com/blog/a-pause... Long Covid has been a constant in my life since January 2021 and since April 2021 I have been fighting and hoping for a cure, an answer, a light at the end of the tunnel. I'm tired. Here is your permission to rest.

To my fellow Long Haulers: I met Mateo in a Long Covid support group and the checked out his podcast. His latest episode had me laughing out loud and nodding along. Covid is Stoopid open.spotify.com/episode/5kgj...

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

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...

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.

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

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

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

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.”

Math is everywhere 🍕🍕

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

Hope looks like positive trial results for Long Covid 🌈🌈

“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...

www.healthrising.org/blog/2026/09...

One infection = Disabled for 5.75 years and counting….

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.

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!

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...

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.

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.

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

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.

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.

My reaction if someone tries to take my Diet Coke.

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)

"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...

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.

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 🌈

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

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...

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/

“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.

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.

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.

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.