Marie, who left a corporate job in Missouri after contracting COVID-19 in the first wave and then developing what came to be known as long COVID, received five months of short-term disability through her employer. It was “a life-saver,” she said.
But in 2022, she caught COVID again, and this time it’s taken much longer to recover from the long COVID that followed.
“I’m suffering fatigue, brain fog and post-exertional malaise where if I do any small thing it exhausts me," she said.
Not knowing when or if she’ll be able to go back to work, Marie (who asked that only her middle name be used for fear of reprisal from the Social Security Administration) began pursuing long term disability coverage and is also applying for disability coverage through Social Security.
"My lawyer said, ‘Expect to be denied, especially because it’s long COVID,’” she said.
Marie and other COVID “long haulers” must navigate a disability claims system that was already difficult before the pandemic, with sometimes years-long wait times and no clear guidance on how to prove their disability.
Long COVID has supercharged those problems for many by adding additional hurdles.
Although the federal government has said that long COVID can be considered a disability under the Americans with Disabilities Act, the health care system doesn’t have a clear way to diagnose it. There is no single test to identify long COVID, and not having a positive test of the initial COVID infection can be a barrier to qualifying for disability, long haulers say.
For people suffering with a disabling condition, having to provide records proving they’re disabled is itself exhausting, Marie said.
“It’s death by paperwork and for people with LC something like paperwork, as crazy as it sounds, can cause us to crash. With cognitive issues, it’s so much harder to get through long forms," she said.
Pretty fucking grim shit. :doomer:
The number of people waiting for long-term disability coverage, and exhausting their savings while they wait, can be expected to grow. According to a November report by the Department of Health and Human Services, as many as 23 million Americans suffer from long COVID. That pool is likely to expand, HHS said, “as COVID-19 continues to circulate."
Contrary to a common perception that COVID is “just a cold,” recent data showed 28% of people who had COVID reported new or worsened symptoms three months after an initial infection. And right now, according to wastewater analysis, the virus, as of April 2023, is circulating at a higher rate than at this time in 2021 or 2022.
The ending of public health precautions such as mask mandates, even within medical facilities, has ensured that the virus will continue to infect more people, with many of them filing for disability.
Last month Congress voted to end the three-year COVID public health emergency. The Biden administration has pledged to help, but the promised help does not include making it easier for long haulers to recoup income lost when they were or are incapacitated.
Two bills addressing the COVID crisis, the Care for Long COVID Act and the COVID-19 Long Haulers Act, which promised improved research, treatment options and other resources — but nothing to help long haulers with disability — died in Congress. Currently there is nothing proposed by the administration that would make the disability application process easier or faster for COVID long haulers.
Hudson gave one cause for hope: that the disability filing process, while never easy or fast for people with any chronic ailment, may become less of a burden for COVID long haulers over time.
“I’ve seen how (Social Security) is progressing to see long COVID as a real thing. The medical community is doing the same, recognizing that this is not imaginary," she said.
The flip side of this growing recognition is that long COVID, a chronic disorder from a preventable communicable virus, will continue to afflict more people.
“I never thought I would have as many long hauler clients as I have, and I can see that increasing as time goes on until we get this virus under control," Hudson said. The average person on the street doesn’t know anything about COVID long haulers. They think they’ll get COVID for a few days and they’ll be OK. They don’t see it as a long-term risk.”
Straight from the horse's mouth--the United States Department of Health and Human Services only expects the number of people suffering from long COVID to grow as the virus circulates. And "letting it rip" would certainly qualify as letting the virus circulate! In case you were wondering if the pandemic is over.
Anyways, there's no rule that says you can't start masking again if you've stopped. :party-parrot-mask:
If a government acknowledges long COVID as a real problem to be checked for and measured, that would imply that it's a real problem that needs to be systemically addressed at the expense of profits and pleasing :grillman: . Thus, it's continually placed in a zone of vagueness and lies.
I feel awful for everyone finding out what it's like to have an "invisible" illness in America. It fucking sucks.
i've never heard of a positive experience with disability claims, can't imagine a novel disability will get consistent coverage before all these people are dead.
Lots of people finding out the very very hard way that the welfare system they were told was stealing all their taxes doesn't actually exist. This is so :doomer: bc even if people get disability the benefits weren't enough to survive on before the mass cost of living and profiteering.
I have a friend who was disabled at the start of the pandemic, following an illness that was almost certainly covid (but there were no tests available so who knows) that caused a cascade of dangerous health issues. They had to spend three months in and out of the hospital, and losing the ability to walk from being bedridden for so long, before social security confirmed they were actually disabled. In those three months their work insurance denied everything the doctors tried to do to help, because it was obvious they couldn't work anymore and were going to be kicked off their insurance soon. They almost died several times during that time.
It's a great system if you hate people and want them to die.
Wow, that's so awful, your poor friend :deeper-sadness: . Are they doing any better these days?
The situation got better when they officially became disabled, but they've been in and out of the hospital for the past three years and come close to dying multiple times. They are now the youngest person in a nursing home, and once there they've had the longest stretch of good health since this all started... but they just got covid from an outbreak there, because they don't want to enforce mask rules on visitors. Luckily they were just boosted the previous month and it seems to have helped, but that was quickly followed by a severe bacterial infection requiring another trip to the hospital.
It's certainly impressed upon me how fucked up our medical system is, and the problems we are inviting by dropping mask mandates in hospitals and nursing homes.
Wow, that's terrible, I'm so sorry. It drives me insane how many people are just going along with this shit and acting like any of this is sustainable. This is probably the biggest example of consent successfully manufactured that I've seen in my lifetime.
Dropping mask mandates in healthcare facilities is one of the most grotesque things I've seen the last few years, as it pertains to the handling of the pandemic. It's not like medical facilities aren't full of sick people or anything, many of whom are particularly vulnerable. :jesus-christ:
Marie (who asked that only her middle name be used for fear of reprisal from the Social Security Administration
In communist china...
This shit makes that Havana syndrome healthcare shit particularly galling
Take my already present well-masked neurodivergence, add in a sprinkle of major depressive disorder and a dab of PTSD from an abusive childhood. Mix in a few rounds on the Covid-mobile as a retail worker who already has chronic pain but can't get diagnosed because I just need to lose weight and I'll be fine.
Meanwhile, I hear about long-Covid insomnia, brain fog, fatigue, and all the other stuff that was already wrong with me but got worse during the pandemic. Considering my already long laundry list of issues, there's no way I could ever prove that the rona made things worse.
Deitie$ know that I can work. I don't Want to go on disability. But at the same time there are just some days when it all just Hurts...when the brain Just Doesn't Work. Since I'm "fine" 65%-70% of the time, no one believes how shit I feel the other 30%. Can we like somehow normalize "Nope today sucks, I won't be at work" as a legitimate reason to call off?
I'm so sorry. :meow-hug: I have a friend who has been chronically ill for most of her life, and she's been housebound since the onset of the pandemic because she is very high risk. Has to live with her ex, and she doesn't have the best relationship with them because she doesn't have any other safe alternatives--her family doesn't take any caution so she can't depend on them for a safe environment. It's been so profoundly fucked how society has treated immunocompromised/disabled people the last few years.
