Thread by @mykola

Fuck, my dad has Long Covid. He got covid at a work meeting right after Christmas and he's still sick, currently on a bunch of meds to help his lung congestion, still.

Fuck all of you people who are pushing for "covid is over" party.

Fuck you, I hope you get Long Covid and spend the remaining decades of your life out of breath, weak and disabled.

What do you have to expect?

1. You are disabled now. You cannot do the things you used to do.
2. Your able-bodied friends and family will mostly abandon you. This happens to all of us.
3. People in your life will constantly ask you if you're better yet, and ignore you if "no".

4. You likely have POTS, which means you can't stand up without getting out of breath.
5. Your lungs are likely covered in scar tissue, and your respiration will never be the same again.
6. Your heart is now damaged and unreliable, life expectancy drastically reduced.

7. You will have good days and bad days, but the good days will mostly feel awful. The bad days nobody will understand how anyone can just have days like that.
8. You will RAPIDLY learn about disabled culture, and either choose to embrace it or suffer alone.
9. This never ends.

10. You watch as people you know and love go about their lives as if things are back to normal, never checking in on you.
11. You realize for them to check in on you would disrupt their cognitive model of "covid is over", so you become a symbol not a person.
12. They have fun!

13. You understand, now, that 10-30% of all covid infections end in Long Covid.
14. You don't understand how or why the government has ignored that reality in all of its policies.
15. You slowly realize you are a victim of capitalist policy that ignored science.

16. Every time you see photos of friends socializing without masks you're reminded that if you get Covid again it could ratchet your condition worse, permanently. You can take fewer risks.
17. Friends complain when you ask them to wear masks around you.
18. The CDC is your enemy.

19. You will never again run through a grassy field on a sunny day, and it's because the government ran the numbers and decided that keeping the population healthy wasn't worth the short-term economic cost.
20. You can't go back to work, and there are more like you daily.

21. You will spend weeks, then months, desperately hoping to find yourself among the percentage of Long Covid sufferers that recover.
22. Three, six, twelve months in you'll realize the grim truth.
23. Many of you will kill yourselves, but I wish you wouldn't. This is real.

24. Slowly, you will start to rebuild your life around the new constraints you've been handed.
25. You will forever divide the course of your life into "before" and "after", and you will never stop feeling rage at those whose choices made this happen.

26. You will maybe finally understand why some of us are so adamant about school closures -- because giving Long Covid to a kid is stealing their best years of health and vibrancy.
27. You will finally see, in high resolution, just how horrific our societal values are.

28. Every time a member of our government talks about "Most people..." with respect to Covid you will understand that they are explicitly excepting you and everyone like you.

You don't count, you don't factor into our national response or the public reaction. Nobody cares.

29. Ok, now that you've got your bearings and you understand what the present and the future look like it's time to come to terms with internalized ableism. Welcome to the next 2-5 years of your life as you learn that it's possible to love a disabled self.

30. Welcome to the global left -- I don't see many people undergoing this process and coming out of it as the same fox-news watching covid-denying people they were. This can and should be a radicalizing event for you.

Now it's time to organize.

31. Initially you will be patient with people. You will have empathy, recognize that they simply don't get it. You'll spend time trying to educate them, one by one. You may even succeed here or there.
32. Soon you will realize most people don't _care_.
33. The anger doesn't stop.

34. You are marginalized now. Maybe you're a rich cis straight white guy and maybe this is your first time experiencing this -- congratulations, you're about to undergo explosive personal growth.
35. Your relationship to your society will never be the same. You are expendable.

I don't have long covid, but I have other disabilities and a lot of this holds for them as well.

I have people in my life that I care about and love deeply who do have #LongCovid , and I watch them as the world moves on without them, and my heart shatters.

Thread is for them.

36. As more and more people talk about post-covid life you understand that they simply don't mean you. You don't have a post-covid life, you will live the rest of your life in 2020 or 2021 or 2022.
37. Increasingly, people will act like you're faking your illness.

38. Most people will just "split the difference" and decide that they can't know if you're faking or not, so congrats I guess you now live in a liminal space where you are a quantum faker.
39. Again, you're disabled now.
40. You will have to learn how to ask for help.

41. You will learn how to _beg_ for help.
42. You will understand, deep in your bones, that we are all interconnected and that nobody can thrive in isolation; but somehow your needs will all be a huge deal to other people, your interconnectedness deemed less valuable.

43. Your challenges will be dismissed because of your strengths, or your strengths will be dismissed because of your challenges. Either way you're not really "human" in other peoples' eyes anymore. You're a problem to solve and an object to pity.

44. If this is you, I'm so sorry. It's not fair and it's not right, and you have been let down and betrayed by everyone whose job it was to not do that.

Please join me in warning others of the risk, RT this thread. People don't get that they are one infection away from this.

I REPEAT: YOU ARE ONE INFECTION AWAY FROM THIS!

Q: But I'm vaxxed and boosted!
A: You can still get Long Covid.

Q: But my infection was mild/asymptomatic!
A: You can still get Long Covid.

Q: I'll just exercise through it!
A: Your long covid just became ME/CFS.

45. You will experience strange new symptoms every few weeks forever.

46. You will go to the ER more than once out of rational desire to fix a specific thing and they will tell you you're fine, or try to tell you it's in your head.

47. You will go to your general practitioner and say "I think I have Long Covid" and he'll calmly reassure you that there's no such thing, you just need rest.

48. The doctors will look at but not address your resting heart rate of 120.

49. The insurance companies are after you.

50. I want to be very clear: getting any kind of care for Long Covid is almost impossible. What care is available is short-term and will prevent you from dying, and then you have to pay a fortune for it.

51. Welcome to experimental medicines with terrible side effects!

52. Because Long Covid is a form of Post Viral Sequelae, and because Doctors simply don't understand Post Viral Sequelae, many doctors will treat your symptoms and tell you the rest is in your head. They're wrong, but don't know how to say "I don't know".

53. (Seriously, never let anyone tell you anything is psychosomatic without asking them for the concrete evidence that the brain is manifesting the problem. They don't have it.

"Psychosomatic" is how doctors say "I don't know."

54. Assholes all over the internet will weigh in with opinions about whether or not you're really sick, whether or not it's really Long Covid, whether Long Covid is real, etc. They don't care about you, they just wanna Be Right.

The parallels between Long Covid specifically and HIV are sobering.

Did you know that HIV takes about 10 years to turn into AIDS on average?

We don't know what Long Covid looks like 10 years from now.

I know how I started this thread but I don’t actually wish Long Covid on anyone but the Trump and Johnson and Putin administrations.

It’s just: only people who get it seem to Get It.

Anyway, if you read this far, thank you. This thread is going to describe a population of people around the world whose size monotonically increases for the rest of our lives, unless some amazing new treatment is found.

Finally: I hope the above thread has helped you to understand why all of the disabled people in your life are freaking the FUCK out about Biden's Covid plan -- because it's the same as Trump's, and offers zero protection against Long Covid.

They are totally ignoring it.

BE MAD!

Having compared notes between Autistic Burnout and Long Covid / ME/CFS I can tell you that the similarities are striking.

It hurts to process information, all sensitivities go up, social challenges become pronounced, etc etc etc.

Note: the symptoms of Long Covid are a lot more complex than what I’ve laid out here. It impacts your body’s autonomic functions, it causes micro clotting which leads to neurological symptoms like memory loss and cognitive dysfunction.

To learn more, follow the experts:

@itsbodypolitic: a support group for people with Long Covid. If this is you and you are struggling alone please reach out to them!

@patientled: spun out of Body Politic and has been on the bleeding edge of Long Covid research since before it had a name.

@ahandvanish: my partner

IF YOU HAVE LONG COVID:

You are not alone. If you haven’t found them yet, check out the support group in the previous tweet.

Disability is isolating until you find out how deeply it connects you to others. You aren’t alone, even if the people in your life dismiss you.

Ah one more piece of advice if this is you -- you'll want to use the #pwme hashtag to find other people with ME for support!