After contracting COVID for a second time, Lori Wiitanen-Parker’s entire life was turned upside down.
The 52-year-old mother had already battled the disease in December of 2020, but when it returned in July of this year she knew something was wrong. She began experiencing severe fatigue, heart palpitations, a constant ringing in her ears, chronic foot pain and a hard time swallowing among other things. She met with doctors who were unable to provide any real solutions, but they knew one thing for sure, she had long COVID.
“It’s a disability that only ones that suffer with it can explain,” she said. “As a lot of people tend to think you are making it up or that symptoms aren’t as bad as you say. It’s very frustrating.”
Long COVID or post-COVID syndrome, has affected nearly one in five Americans who have had COVID, the CDC reports. The prevalence of long COVID varies by individual, with some reporting only their loss of taste or smell, while others have found themselves permanently disabled.
“I’m literally so depressed from the loud ringing in my ears and head, and lack of sleep that I literally don’t leave my house much,” said Wiitanen-Parker.
With the dramatic influx of newly disabled Americans, researchers are struggling to understand how to approach and treat long COVID. The science is limited and what is available is mainly personal tales and data guided by patients’ own retelling of their persisting symptoms.
Raphael Kellman, MD, a Physician of Integrative and Functional Medicine at Kellman Wellness Center said finding ways to treat long COVID at the source will be key.
“There are limited conventional medical interventions right now,” he said. “Much of which is focused on treating the symptoms, rather than the root cause of the issue.”
And despite rough estimates from hospital systems, no one truly knows how many people suffer or will suffer from long COVID, making it hard to pinpoint, classify and prevent.
“As COVID is an inflammatory condition, it has been shown to trigger the onset of autoimmune conditions in some people,” Dr. Kellman said. “Research has shown that people who experience long COVID have alternations in their gut microbiome which can result in systemic inflammation, as well as symptoms.” He also noted that residual viral loads that persist in the system can cause reactivations of other viruses like Epstein-Barr.
But as resources continue to be limited and the medical community grapples with how best to treat long COVID patients or long haulers as they’re often referred to, many health advocates are channeling their energy elsewhere in hopes they can help the newly disabled and make a more direct impact.
Sara Fergenson, a social worker and rural public health advocate in West Virginia, said taking an all-in, inclusive approach to talking about disability is the best way to create real change.
“I think so many people define someone as disabled if they have physical limitations,” she said. “Someone in a wheelchair or someone who needs physical help doing daily tasks. But if this virus has taught us anything, it’s that we need to come together, and that begins with conversations around normalizing what disabled means. We do that, I think more people will be willing to help.”
“You most definitely know someone who is disabled — and after COVID you probably know several people who are disabled.”
And when it comes to talking about it, the language can be tricky. Not all long-COVID patients meet the threshold commonly associated with being disabled. Just over 30 years ago, the Americans with Disabilities Act was written to include a legal definition that encompasses anyone who has a physical or mental impairment that substantially limits one or more major life activities. Now, the medical community has worked to expand that definition to include long haulers who have seen their daily lives turned upside down.
More than 61 million adults in the United States live with some form of disability, according to the CDC. And those numbers are being bolstered by between 7 and 23 million newly disabled long COVID patients.
“You most definitely know someone who is disabled,” Fergenson said. “And after COVID you probably know several people who are disabled. Keep that in mind as you navigate this post-COVID world and never assume someone is okay if you can’t see a physical disability.”
Long haulers who have received a medical disability diagnosis from their doctor are eligible for benefits and accommodations under the Americans with Disabilities Act. But an important question for the future will be if federal disability programs will count long COVID as a disability, opening the door for more benefits and resources.
“It’s certainly a question we’re all waiting to be answered,” said Fergenson. “But for now, I urge anyone who is seeking out resources to contact their local social security office or doctor.”
For now long COVID patients are seeking out communities and seeing the benefits in sharing their stories to cope. David Parker, a member of the ‘Long Haulers Post COVID Support Group, on Facebook joined the page after he contracted COVID and his symptoms never went away.
“I do have occasional episodes of fatigue but most of the time I’m ok,” he posted. “I also developed facial palsy and paraesthesia in my mouth which makes eating and drinking a nightmare, and brain fog is a constant problem.”
But the page has also allowed long haulers to offer words of support, and let others know that they’re not alone.
“I do hope you get through this, stories like yours remind me that things could be much worse,” Parker wrote below someone’s post. “Take care.”
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