OHIO – More than two years into the COVID-19 pandemic, and the world is getting back to normal in many ways.
But for millions of Americans who have fallen ill with COVID, life is still anything but.
Long COVID is considered a disability under the Americans with Disabilities Act, but not everyone is eligible.
The process to get the benefits can be long and complex, especially since there isn’t a single test that proves a Long COVID diagnosis.
“Just as polio, HIV and tuberculosis were defining diseases for the 20th century, I think Long COVID could be a defining disease for the 21st century,” said University hospitals Medical Director of the COVID Recovery Clinic Dr. David Rosenberg.
Kelly Gleine literally lives in her living room.
“It totally took over my life,” she said. “That’s all I do. I go on dates.”
Since falling ill in March 2020, she has not been able to return to her normal daily life or do much outside of the home.
“My 90-year-old grandmother is in better shape than me right now,” she said.
This is because she never got better after having COVID-19.
This long hauler went from jeweler to “professional patient” in hopes of getting disability benefits.
“It gave me a purpose, knowing I was preserving someone’s memories,” she said of her former career.
She explained some of her symptoms.
“The crushing fatigue is number one,” she says. “Fibromyalgia pain. Nerve pain. Almost always feels like my skin is on fire. Neuropathy in my hands and feet. Loss of smell and taste, which is not still completely back.
Gleine misses her career and wants to work.
But she said she couldn’t. The pain and the almost daily appointments with the doctor prevent him from keeping a job. The 40-year-old takes 21 medications a day.
“It was very hard to realize that I couldn’t go back to my job and I couldn’t go back to something that I love,” she said. “It’s hard. It was my life. I’ve done it forever, and I was very good at it. I went to school for it. I taught it and I don’t know if I will ever see him again,” she said.
Some days are better than others, but there is no consistency.
She keeps track of everything.
“Sixty-five. There are 65 doctors I’ve seen since March 2020,” Gleine said. “Because I needed to document all of this for the disability.”
Gleine began the process of applying for Social Security disability insurance around January 2021 and immediately hired an attorney.
According to the U.S. Department of Health and Human Services, long COVID may be a disability under the Americans with Disabilities Act if it “significantly limits one or more major life activities.”
She was denied benefits and appealed the decision more than once. Gleine has been waiting for another hearing since May of this year.
“You feel like you’re fighting an uphill battle that you’ll never, ever win,” she said.
Currently, the mother has no income. Unemployment support ended in November 2020. Since then, his savings and 401k accounts have been depleted.
She survives thanks to the help of her relatives.
“Gifts and credit cards maximized,” she said.
Gleine is about to accept that her life may never be the same again.
“I would work through it, you know, and just, you know, keep going, keep going,” she said. “And the fact that I couldn’t, even if I wanted to, is absolutely killing me.”
Rosenberg explained that Long COVID is a very real condition, but there is no single objective test to diagnose it. It requires extensive clinical evaluation of almost every system in the body.
“It’s not like you can do a specific blood test or a throat culture or something and say, ‘My God, you have Long COVID. It’s your condition,” he said. “And maybe eventually, you know, we’ll find out that research will determine if you have that pattern of lab tests that will define the presence of that disorder. You know, it’s not like ordering a strep test for strep throat or a light test for mononucleosome. So basically it’s about taking this assessment inventory of their total body function, of what’s bothering them.”
Rosenberg said the lack of objective testing is a major issue for patients applying for disability. He said this is all a work in progress.
He thinks federal agencies and insurance companies need to work together to determine what kind of testing should be done for patients with Long COVID to prove a person is disabled.
“You can get subjective complaints and we can get screening questions, but Social Security disability insurance programs require, for example, in Social Security, that you have objective tests that have been around for a year,” did he declare. “So your impairment that’s objectively based has to be present for a year. Obviously, we’re not necessarily going to get that kind of objective test in brain fog or weakness. So that’s a very difficult situation.”
Rosenberg said he sees more patients every day asking for help applying for disability benefits. He said a holistic treatment approach has been helpful for many of his patients with Long COVID, and he wants people to know there is hope.