The Sorrow of Long COVID: Achieves Major Disability Status

by | Jun 9, 2022 |

Print Friendly, PDF & Email

I often criticize the mainstream media. But it is significant and impressive that The Washington Post just did a major front-page story titled “Long covid could change how we think about disability.” It makes a strong case that the millions of Americans suffering from long COVID have a legitimate physical disability. In a real sense, the COVID pandemic has morphed into long COVID. And the victims need the help that can be obtained by being classified as having a physical disability. For millions, long COVID is waiting just around the corner.

Here are some important excerpts from the article:

“The coronavirus pandemic has created a mass-disabling event that experts liken to HIV, polio or World War II, with millions suffering the long-term effects of infection with the coronavirus. Many have found their lives dramatically changed and are grappling with what it means to be disabled.”

“As many as 61 million, or one in four, adults live with some form of disability, according to the Centers for Disease Control and Prevention. Those numbers are being bolstered by between 7 and 23 million long haulers — including a million who can no longer work — according to recent government estimates. Think tanks and others anticipate the numbers will rise as the coronavirus settles in among us as an endemic disease.”

“For Stanislawczyk [featured in the article], her new identity is complete with its own vocabulary. In conversations with other long haulers, Stanislawczyk now calls herself a “spoonie,” referring to a common strategy for managing chronic illness, in which spoons are used to represent energy — people may say, for instance, that they have a limited number of “spoons” to use per day, or that it may take them more spoons for certain tasks than it would for other people. She calls days when her heart races “Potsie days” — an allusion to a blood circulation disorder known as postural orthostatic tachycardia syndrome, or POTS, that she and many other long haulers have been diagnosed with.”

“We feel like our responsibility is to fight alongside the long-covid community. This is their time to focus on what they need,” said Cokley [of the Ford Foundation], who said disabled people already understand the bureaucratic challenges long haulers will face if they need to apply for benefits and can provide peer support as well as what she calls “tips of the trade.” (They include: If a doctor doesn’t believe you or denies you a test, tell them to document the denial in your file; many will quickly change their view, Cokley said).”

“In July 2021, on the 31st anniversary of the ADA [Americans with Disabilities Act], the Biden administration announced that long covid could be considered a disability under the civil rights law.”

“Ken Thorpe, a former deputy assistant secretary for health policy at the Department for Health and Human Services who chairs the Partnership to Fight Chronic Disease, believes long covid offers opportunities to update many aspects of health policy in part because the condition is affecting “a different mix of people than what we’ve seen in the traditional disability population.” They include Sen. Tim Kaine, D-Va., who has long covid.

Long covid “puts a different and important face on the whole problem of long-term care,” Thorpe said. “Collectively, we can be more effective highlighting the policy issues.”

Still, people whose lives have recently been changed by chronic disease sometimes resist the idea that they belong in the disabled community.

Alba Azola, a physiatrist at Johns Hopkins, said that helping long-covid patients make that transition is one of the most challenging parts of her job as co-director of the Physical Medicine and Rehabilitation Post Acute Covid Team Clinic.

“Azola sees patients on the hospital system’s Bayview Campus at a clinic repurposed for the new population of long haulers, often drawing on findings from other chronic conditions to inform their care. That can involve helping patients to readjust expectations and conserve energy — sometimes, as in Stanislawczyk’s case, by deciding to use a wheelchair.”

“To look at a 30, 40-year-old and tell them we are not going to be able to say that in two months she can go back to work, or to recommend a wheelchair and special accommodations, it’s really heartbreaking,” Azola said. “It’s probably one of the hardest things I have to do.”

“Some long haulers are beginning to see the shared benefits of uniting with the disability community.“

“Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative, who got covid early in the pandemic, joined the Century Foundation’s launch of its new disability initiative.

McCorkell began to identify as disabled in December 2020 after she pushed herself too hard and spent a week nearly unable to leave her bed. She recalls the moment as both emotional and empowering.

“I allowed myself to accept my body for what it was, what it could do and be more grateful and more honest about my limitations,” McCorkell recalled. “The people who really understand how I now view the world are other disabled people.”

It has also given her a better understanding of the barriers disabled people are working to break down.

“It’s all so interconnected,” McCorkell said. “The benefit of millions of people getting sick all at once, is we have remarkable access to people and power that others have struggled to get for a long time. I want to make sure that I am representing those people.”


Another important and excellent related article from the insurance industry is: “Long COVID patients face more than health challenges.” It is so good here it is in its entirety. The agony of long COVID is just beginning to be widely disseminated.

With so much still unknown about long COVID, Wendy Thomas has accepted that managing her myriad of debilitating symptoms will require trial and error. So, when her doctor prescribed Adderall for her struggle to focus, even to understand a paragraph, she agreed to give it a try.

Thomas’ insurance company was less agreeable.

She was told her prescription would be covered only if she had a diagnosis. That’s an impossible ask for those suffering from long COVID because there’s no way to confirm the illness. It cannot be diagnosed through a test, exam, x-ray, or any other tool. Nor is it possible to make a diagnosis based on symptoms. One patient may suffer severe fatigue and respiratory challenges, while another may have body aches and heart palpitations. A third could experience gastrointestinal infections severe enough to trigger malnourishment and dehydration. Others see dormant conditions like Lyme disease return.

“Insurance companies don’t recognize Lyme disease fully, and they can’t play that game with long COVID because people are going to die,” Thomas said. “They’re going to have to recognize that we don’t have answers right now. They’re going to have to accept that people are going to be getting alternative therapies. I mean, some people try acupuncture. That’s never worked for me, but some people try it. And it might work. We don’t know.”

Demand for a diagnosis that’s impossible to make has also been a roadblock for some seeking disability benefits or work accommodations when approaching the providers and agencies that determine benefit eligibility.

“It’s new and a lot of medical providers don’t understand long-haul COVID,” said Nashua attorney Janine Gawryl, who helps long COVID clients get disability benefits. “And some are skeptical of it. And it’s even worsened by the fact that symptoms are not measurable. There is great skepticism often of these claims because the decision-makers have to decide whether people are faking or simply lazy. It’s much simpler to prove a disability if you have an x-ray, blood test, or exam that can confirm it.”

Some, like Thomas, can’t even produce a positive COVID-19 test because when she became ill in early 2020, her gastrointestinal symptoms were misunderstood as food poisoning and irritable bowel syndrome, and testing wasn’t readily available. Her physician concluded she had long COVID based on her high antibody count, loss of taste and smell, close exposure to a friend who’d tested positive, and the similarity between her lingering symptoms and those of other COVID-19 patients.

“He said, ‘You know if it looks like a duck and quacks like a duck, it’s a duck,'” Thomas, 63 of Merrimack, recalled. “He said we’re going to call it COVID because that’s the only thing we have right now.”

Laurel Carter, 35, couldn’t get a diagnosis until she was seen at Dartmouth-Hitchcock Medical Center’s long COVID clinic. Like Thomas, her symptoms began at the start of the pandemic.

“I kept getting tested for different things, and essentially some doctors said, in so many words, there’s nothing wrong with you. You’re fine,” she said. “And I couldn’t walk upstairs without stopping when I had been an athlete my whole life.”

Shrouded in Confusion and Secrecy

It’s no wonder there’s so much confusion and awareness surrounding long COVID. It’s defined broadly as ongoing health problems that cannot be explained by another diagnosis. And those with it, especially women, say they reveal little about their condition for fear of losing a job, facing a physician’s disbelief, being dismissed as weak, or being accused of exaggerating their illness for attention.

“I don’t look sick and many people, I have realized, are just not empathetic or understanding if it’s not something that they can’t see. And so I’m very wary about talking to people about any of this,” said Robin Skudlarek, 58, of Londonderry. “I think when you say constantly, ‘Oh, I’m having a really bad day,’ people think it’s in your head or you’re being a hypochondriac. I’ve learned who I can be honest with or who understands, and it’s actually a really small group of people.”

Skudlarek has not continued to work since becoming sick. But Carter and Thomas have. Carter, who does marketing for an online education company, has been able to do her job remotely and manage memory challenges by taking notes as she works.

“I do feel just not quite as smart as I used to be,” she said. “And I’m not as quick as I feel I used to be, so I’m very thankful that I can still do my job. I would imagine it would be incredibly difficult (to tell a boss about job limits) because at work, you use your brain and when it’s not firing like it should, it can be stressful.”

It’s unclear how many people are navigating the illness, absent any reliable count of long COVID cases, by the state or federal government. But a new Centers for Disease Control and Prevention study shows it could be prevalent, estimating that one in five adults will experience long COVID.

Dartmouth-Hitchcock’s Post-Acute COVID Syndrome Clinic, the only one in the state dedicated to long COVID care, had 700 referrals in its first year and has seen or has scheduled to see about 400 people.

There’s also more to learn about who’s most vulnerable and what protections are provided by vaccination. Medical experts stress vaccination remains the best protection.  [This view remains controversial.]

“Getting vaccinated and boosted reduces the likelihood of you getting infected in the first place, which then reduces the likelihood of every other consequence,” Dr. Aalok Khole, an infectious disease expert at Cheshire Medical Center in Keene, said in a recent interview.

Management, Not Treatment

Among the cruelties of long COVID is the absence of a cure.

Long-haulers can manage their symptoms only under the guidance of a provider, a clinic like Dartmouth-Hitchcock’s, the only one in the state, or quite often, suggestions from others suffering they’ve met in online support groups.

Thomas, a project manager for an energy efficiency consulting firm, has learned to work around her brain fog and difficulty focusing by writing everything down and reading documents for work early in the day before she gets tired.

Far worse have been the persistent gastrointestinal issues that have at times left her doubled over in pain and visiting the bathroom 20 times a day. She’s down 57 pounds since losing her sense of taste and smell, and ability to eat most foods. For those intestinal challenges, Thomas has also come to rely on her nutritionist.

Thomas also continues to see her physician.

“At this point, my doctor is kind of floating the idea that I’ve got permanent damage, and I’m just going to have to just live with it and going to have to learn how to manage it,” she said. “After a year and a half, I tend to agree with him.”  [This view of permanent physical damage has merit.]

Skudlarek, who also contracted COVID-19 at the start of the pandemic and has made several trips to emergency rooms, has struggled most with respiratory challenges, a terrifying experience for a lifelong runner and yoga teacher. She’s also experienced a high fever and heart palpitations.

She was given a half dozen inhalers to try. She was told to isolate herself at home until her fever subsided and discouraged from returning to the hospital unless she needed a respirator. Skudlarek spent 21 days in her bedroom.

“The body aches were off the charts like nothing I’ve ever had,” she said. “I’ve had the flu a few times in my life, and I thought that was horrible. I couldn’t even focus on anything, like a TV show or a movie. I was writhing in pain.”

Those symptoms were gradually replaced by new ones: low blood pressure, rashes, and stomach pain. She sought help from an allergy clinic in Massachusetts and a naturopath. She began taking antihistamines. Her symptoms improved after getting vaccinated.

Skudlarek also developed significant anxiety about contracting COVID-19 again.

“A trip to the grocery store was terrifying to me,” she said. “I know that sounds really bizarre, and I’m somebody who’s never been afraid of anything. It was awful.”

In December 2021, Skudlarek tested positive a second time and lost the health gains she’d made. Desperate for an alternative to inhalers and antihistamines, Skudlarek tried an herbal powder she’d read about online.

“I was like, what can it hurt?” she said. “It really started helping my stomach and like literally after the first dose; I stopped having diarrhea. So it was kind of amazing.”

Carter travels from Boston to the Dartmouth-Hitchcock clinic because the physical and respiratory therapy she’s received helped mitigate her symptoms and emotional stress. She’s learned breathing techniques and slowly regained her endurance from one minute of activity to 30 minutes of movement. When she’s suffered setbacks, she’s been able to remain optimistic because she’s seen progress and feels supported by the clinic’s medical team.

“They have affirmed what other doctors had not, that we know that your tests are coming back like you’re fine, but I believe you that you are not fine and that something is wrong,” she said. “And it just finally felt like someone in the medical community had my back.”

Looking Ahead

The pushback long-haulers experience in medical offices has been repeated when they seek insurance coverage, disability benefits, and job accommodations.

The experimental nature of treating long COVID can be at odds with health plans that want clear evidence that a test or therapy is “medically necessary.” Ongoing health problems may require more medical appointments than are covered by a health plan.

“Long-patients experience multiple obstacles to obtaining the care they need for this novel condition – poorly understood symptoms, limited treatment options, uncertain prognosis, and potential denial of coverage for the care they need by their insurer,” the Center for Health Insurance Reforms at Georgetown University warned in an October blog post. “In the short term, patients with long COVID will need to understand their appeal rights should their health plan refuse to pay for their care.”

Andrew Demers, spokesman for the Department of Insurance, said the agency has not received complaints about insurance coverage denials. He urged those with concerns to call the consumer division at 1-800-852-3416.

“Since the onset of COVID-19, health insurance providers across New Hampshire have been working proactively with the (New Hampshire Insurance Department) to address testing and treatment issues,” he said.

Long-haulers may be entitled to job accommodations under the Americans with Disabilities Act, such as a part-time or modified schedule, remote work options, or permission to take frequent bathroom breaks, if their health impairments substantially limit a major life activity, such as reading, concentrating, or working. The U.S. Department of Labor has issued guidance on requesting workplace accommodations.

Social Security benefits and short- and long–term disability coverage may also be an option, though each may have different eligibility requirements. Jake Leon, spokesman for Health and Human Services, said the department has received 15 to 25 disability claims related to COVID-19 or long COVID. He did not provide the outcome of those claims, including the number approved.

But these options can be challenging to navigate, said Gawryl, especially for those sidelined with chronic fatigue and brain fog.

“As more time has passed, entities have learned and mastered the process of denial and how to support a denial,” she said. “And they have been successful because (people with disabilities) are the easiest people to deny because they don’t have the capacity to fight back. And because they are disabled, they don’t have the income to pay for an attorney to fight back. They are often victimized by their incapacity.”

Thomas, a former state representative, would like to see the Legislature establish a commission to review the insurance industry’s handling of long COVID. Physicians also need to better understand symptoms, and she wonders how schools will support students who develop long COVID.

“We are going to have to do a lot of education,” she said


Biological cause of long COVID

There is a lot of evidence that micro blood clots may be a dominant cause of long COVID. A recent medical article noted:

“Recent studies have shown that individuals with long COVID are more likely to develop small clots in blood capillaries and show abnormalities in the levels of factors that promote blood clotting. Such micro clots can interfere with the supply of oxygen and nutrients to the body and potentially result in long COVID symptoms such as fatigue.”

And this article noted:

“Fibrin amyloid micro clots represent a novel and potentially important target for both the understanding and treatment of Long COVID and related disorders.”

Dr. Joel S. Hirschhorn

Dr. Joel S. Hirschhorn, author of Pandemic Blunder and many articles and podcasts on the pandemic, worked on health issues for decades, and his Pandemic Blunder Newsletter is on Substack. As a full professor at the University of Wisconsin, Madison, he directed a medical research program between the colleges of engineering and medicine.

Dr. Hirschhorn worked on public policy for the US Congress for many years. As a senior official at the Congressional Office of Technology Assessment and the National Governors Association, he directed major studies on health-related subjects; he testified at over 50 US Senate and House hearings and authored hundreds of articles and op-ed articles in major newspapers. He has served as an executive volunteer at a major hospital for more than 10 years. He is a member of the Association of American Physicians and Surgeons, and America’s Frontline Doctors.

Use the code ‘OUTLOUD’ and save 15%
Notify of
Inline Feedbacks
View all comments

Disclaimer: The information contained in this website is for educational, general information, and entertainment purposes only and is never intended to constitute medical or legal advice or to replace the personalized care of a primary care practitioner or legal expert.

While we endeavor to keep this information up to date and correct, the information provided by America Out Loud, its website(s), and any properties (including its radio shows and podcasts) makes no representations, or warranties of any kind, expressed, or implied, about the completeness, accuracy, reliability, suitability, or availability with respect to its website(s) or the information, products, services or related graphics and images contained on the website(s) for any purpose.

The opinions expressed on the website(s), and the opinions expressed on the radio shows and podcasts, are the opinions of the show hosts and do not necessarily represent the opinions, beliefs, or policies of anyone or any entity we may endorse. Any reliance you place on such information is therefore strictly at your own risk.

At no time, nor in any event, will we be liable for any loss, or damage, including without limitation, indirect or consequential loss of data or profits arising out of, in an association of, or connection with the use of this website.

Through this website, users can link to other websites that may be listed. Those websites are not under the control of America Out Loud or its brands. We have no control over the nature, content, or availability of those sites. America Out Loud has no control over what the sites do with the information they collect. The inclusion of any links does not necessarily imply a recommendation, nor does it endorse the views expressed with or by them.

Every effort is made to keep the website up and running smoothly. However, America Out Loud takes no responsibility for, nor are we, and will not be liable for being temporarily unavailable due to technical difficulties beyond our control. America Out Loud does not sell, trade, nor market email addresses or other personal data.

Why Roe v. Wade Will NOT Impact the Election

Why Roe v. Wade Will NOT Impact the Election

The media is trying very hard to turn the upcoming midterm elections into a referendum on abortion…A large segment of the left is once again losing its mind and proving to independent voters what independent voters were already figuring out – that the political left is led by a radicalized group of thugs who want to burn down our nation and make us live under an ultra-authoritarian communist tyranny…

American Democracy, The End of An Era

American Democracy, The End of An Era

Communism in America in 2022, at least in its early stage, is following the communist rule-book of social/political upheaval and violence. Communism is gaining control of the American government, the judicial system, and other institutions through leaps and bounds. Yet, it is achieving this through subterfuge. Let us not be deceived by…

The Elimination of Gun Owners is the Goal of Red Flag Laws

The Elimination of Gun Owners is the Goal of Red Flag Laws

Red Flag Laws are a calculated start of a slippery slope to control our young people, eliminate the 2nd amendment and disable Americans from the right to defend themselves. Every totalitarian society started by eliminating the right and/or opportunity for the populace to self-defend. So which is it? Well-intentioned ignorance? Or an insidious plot to change and control our American way of life?

Dr. Peter McCullough Testifies in Texas…”Pandemic Lessons Learned”

Dr. Peter McCullough Testifies in Texas…”Pandemic Lessons Learned”

Even a data-model expert from the University of Texas Southwestern Medical Center did not consider early treatment in models to predict hospitalization. This was a stunning revelation as modern estimates have early treatment resulting in a 95% reduction in the risk of hospitalization and death. This means any COVID-19 data model is useless unless it considers…

Biden Must Stop Sharing Our Nation’s Intelligence with the World

Biden Must Stop Sharing Our Nation’s Intelligence with the World

Damaging articles on U.S. information-sharing with Ukraine told Russia what we were sharing with Kyiv. While clearly, the administration did not want to escalate the war, sharing information that we planned to contribute over a dozen Polish fighter planes was extremely helpful to Russian strategists. It is a real mystery how this administration could have been so wrong on…

The American Communist Party Must Be Defeated

The American Communist Party Must Be Defeated

Once the world’s preeminent fighting force, our Armed Forces are now seemingly more concerned with teaching members to use the correct pronouns and promoting ‘letters of the alphabet’ to command positions than in protecting America and winning wars. Now we find ourselves under attack from outside our country, as well as from within…

Wind Energy or Blowing Smoke Up Our Arses!

Wind Energy or Blowing Smoke Up Our Arses!

Among the most significant weaknesses of the horizon blotting Chinese windmills from hell are those 120 to 200-foot-long blades and what to do with them when they wear out, break, get dented, or get a bullet hole in them? Every time a blade chops up an eagle or other large bird (what’s the avian death count now, 500,000 birds annually) gets even slightly dented, it needs to…

Recognize the Real Red Flags on the Rights of all Americans

Recognize the Real Red Flags on the Rights of all Americans

Many well-intentioned psychologists and medical doctors suggest that mental illness is a serious problem that can lead to violent acts, particularly depression. Dr. Joseph Mercola, a popular osteopathic physician calls antidepressants the elephant in the room. He rightly states that antidepressants can cause suicidal and homicidal thoughts, agitation, impulsivity, and a…

The Marxist Revolution in California Threatens Its Very Existence

The Marxist Revolution in California Threatens Its Very Existence

The state is tumbling over three critical issues. First, the human-caused climate change fraud promotes the end of life as we know it if we continue to burn fossil fuels and emit life-giving carbon dioxide, the only reason mankind can inhabit Earth. Second, the Critical Race Theory that is turning citizen against citizen as either oppressed or oppressors, and third is the covid China virus that has disrupted all normal life and…

The Warning Signs Make Monkeypox the New SARS-CoV-2

The Warning Signs Make Monkeypox the New SARS-CoV-2

In November 2021, a report was issued by the Nuclear Threat Initiative, which, along with the Munich Security Conference, held a tabletop exercise to consider responses to a fictional monkeypox outbreak that was posited to occur in May 2022. Stretching credulity, fiction has now been replaced by fact as the world experiences a genuine explosion of the monkeypox disease starting on the exact assigned date. Could this exact prediction be one more big coincidence?

Overturning Roe v. Wade Does Not End Abortion; It Returns the Authority to the States

Overturning Roe v. Wade Does Not End Abortion; It Returns the Authority to the States

What can the American people conclude, both from the reactions to the leak of the draft and the anticipated reactions to this opinion? First, we should recognize that there are people in our country for whom the ends justify the means. Some will use lies, intimidation, and violence to get their way. This should be obvious from the hysterical disinformation…

America Out Loud 6 years

Celebrating 6 incredible years fighting to restore liberty and justice to our beloved America.

Your Source for Free Speech, Talk Radio, Podcasts, and News.


Here we take on the challenges of our generation so that we can preserve future generations. Please consider making a contribution in the fight for liberty!


The APPS are free; the mission is priceless!

Free APP

Podcast Networks

Apple Podcasts
Google Podcasts

Subscribe and Listen on Your Favorite APP

Our Columnists and Show Hosts

Truth For Health

Apple Podcasts

COVID Solution Summit

Apple Podcasts

Evacuating Americans & fully-vetted Afghan's at Risk - Help Us!

Apple Podcasts

Empowering and mentoring conservative trailblazers from Generation Z to win!

Apple Podcasts

Turning Point Action is Recruiting Precinct Chairs - Become a Grassroots Warrior Today!

Apple Podcasts

Please join us to protect the Supreme Court:
Sign the Petition!

Apple Podcasts

The LATINO USA EXIT from the Democrat Party, click for details...

Apple Podcasts

Fighting corporate censorship and ensuring voter integrity...

Apple Podcasts

Support wounded and fallen police officers. The Wounded Blue.

Wounded Blue
Share via
Copy link