Thread by @loscharlos

I turn 34 today — I’ve now spent my entire 30s with #LongCovid — about as long as I was in high school or college. I haven’t been on a walk since Spring 21’ & remain severely housebound — whole thing is surreal.

thoughts for 2024 🧵

The deluge of folks who develop long Covid from this current wave are going to be offered the exact same help I was offered 4 years ago. We still have absolutely zero tools for #LongCovid — which according to @CDCgov still “remains common” after infection — while few recover.

https://twitter.com/loscharlos/status/1703125291022045509

I had awful stress dreams (financial) all night — & throughout 2023. I started my SSDI app in Dec 2022 & still no resolution. I have few months of savings left.

#LongCovid pts have had a violent awakening to our failed safety net. There is no support for folks in this position.

https://twitter.com/loscharlos/status/1636455387032621056

Last year was exceptionally challenging for relationships in every aspect of my life. To those suffering #LongCovid it’s not just their life on hold & disrupted — but to all those invested in them — without treatment, these will likely be lifelong conditions. Bend -> break ⏳💣

https://twitter.com/hayley_gleeson/status/1739747056359776451

In 2024 I’d love to see us double down & elevate our organizing & advocacy. We desperately need a more sustained USGov strategy & more offensive outside advocacy campaigns. Last yr saw so many step up in awesome ways. We need so many more joining the fight, & clear ways to do so.

I also think we could be more introspective & thoughtful about how to leverage relationships and solidarity with other communities to amplify our cause — #PodSaveJon forced our issue to positions of power like I’ve never seen on this platform. Incredible solidarity in action.

Also, reflect more on cultural undercurrents holding up our efforts — by reckoning with greater systemic forces that make #LongCovid so difficult to grapple with — I’m now v skeptical there will ever be a tipping point for society fully addressing this based on scale alone.

We see time & again otherwise reasonable good people confronted with the horror & science of LC & still remain 💯 unfazed — I think many have underestimated things like perception of chronic illness, attitudes twds disability, medicine & invisible disability, etc. #PodSaveJon

Presenting #LongCovid as new phenomenon in a vacuum hasn’t change the fundamental human response — from both the public & medicine — its because the essential nature of this condition is at the dead center of all these greater forces, no matter how we try to spin it or fight it.

Also not clear to me universal biomarkers is going to entirely change this dynamic, we already have dozens of biomarkers.

We should consider using what’s undeniably unique about phenomena of #LongCovid — size, scale, & impact — to bring rest of world into these conversations.

Anyways, that’s that’s just a long winded thought how I worry focusing on advocacy alone may not be sufficient when we are pushing them against all these greater cultural / systemic currents, we may need some focus upstream (😎) as well.

Besides that I feel slightly optimistic about 2024 — clinical trials, refined advocacy, increasing awareness, collaboration — and encourage everybody to keep sharing their story & not be afraid to learn, mess up & step up in this space.

🐲🙏