OHIO — More than two years into the COVID-19 pandemic, and the world is returning to normal in many ways.

What You Need To Know

  • Long COVID is considered a disability under the Americans with Disabilities Act, but not everyone qualifies. 

  • The process to obtain the benefits can be long and complex, especially since there isn’t a single test that proves a Long COVID diagnosis. 

  • Kelly Gleine is a COVID long-hauler went from being a jeweler to a "professional patient" hoping to obtain disability benefits.

  • She’s been denied benefits and appealed the decision more than once.

But for millions of Americans who got sick with COVID, life is still anything but.

Long COVID is considered a disability under the Americans with Disabilities Act, but not everyone qualifies. 

The process to obtain the benefits can be long and complex, especially since there isn’t a single test that proves a Long COVID diagnosis. 

“Just like polio and HIV and TB were defining illnesses for the 20th century, I think Long COVID may be a defining illness for the 21st century," said University Hospitals COVID Recovery Clinic Medical Director Dr. David Rosenberg.

Kelly Gleine lives in her living room, literally.

“This has totally taken over my life," she said. "That’s all I do. I go to appointments."

Ever since she got sick in March 2020, she’s been unable to return to her normal day-to-day life or do much of anything outside the house.

“My 90-year-old grandma is in better shape than I am right now," she said.

That’s because she never got better after having COVID-19.

This long-hauler went from a jeweler to a "professional patient" hoping to obtain disability benefits.

“It gave me purpose, knowing that I was preserving somebody’s memories," she said about her former career.

She explained some of her symptoms.

“The crushing fatigue, that’s number one," she said. "The fibromyalgia pain. The nerve pain. My skin feels like it’s on fire pretty much always. The neuropathy in my hands and feet. The loss of smell and taste, which isn’t quite back yet.”

Gleine misses her career and wants to work.

But she said she can’t. The pain and near daily doctor appointments make it just about impossible for her to hold down a job. The 40-year-old takes 21 medications each day.

“It was very hard realizing that I could not go back to my job and that I could not go back to something I love," she said. "It’s tough. That was my life. I’ve done it forever, and I was very good at it. I went to school for it. I’ve taught it and I don’t know that I’ll ever see it again," she said.

Some days are better than others, but there’s no consistency. 

She keeps track of everything.

“Sixty-five. There are 65 doctors that I have seen since March of 2020," Gleine said. "Because I needed to document all of this stuff for disability.”

Gleine started the process of applying for Social Security Disability Insurance around Jan.2021 and got an attorney right away.

According to the U.S. Department of Health and Human Services, Long COVID can be a disability under the Americans with Disabilities Act if it “substantially limits one or more major life activities.”

She’s been denied benefits and appealed the decision more than once. Gleine has been waiting on another hearing since May of this year.

“You feel like you’re fighting an uphill battle that you’ll never win, ever," she said.

Right now, the mother doesn’t have an income. Support from unemployment ended in Nov. 2020. Since then, her savings and 401k accounts have been drained.

She’s surviving on help from loved ones.

“Gifts and maxed out credit cards," she said.

Gleine is in a place of accepting that her life may never be the same.

“I would work through it, you know, and just, you know, go on, carry on," she said. "And the fact that I can’t, even if I wanted to, is absolutely killing me."

Rosenberg explained Long COVID is a very real condition, but there is no single objective test to diagnosis it. It requires a long clinical assessment of just about every body system.

“It's not like you can do a specific blood test or throat culture or something and say, ‘Gosh, you have Long COVID. That's what your condition is,'" he said. "And maybe eventually, you know, we'll figure out research will determine that if you have this profile of laboratory tests that will define the presence of this disorder. You know, it's not like ordering a strep test for strep throat or a mild test for mono nucleosome. So basically it's doing this inventory of assessment of what their total bodily function is, what's bothering them."

Rosenberg said the lack of objective testing is a major problem for patients applying for disability. He said this is all a work in progress.

He believes federal agencies and insurance companies need to work together to figure out what kind of testing should be done for Long COVID patients to prove a person is disabled.

“You can get subjective complaints and we can get some screening questions, but the Social Security Disability Insurance programs require, for example, in Social Security, you have to have objective testing that exists for a year," he said. "So your impairment that's objectively based has to be present for a year. Obviously we're not going to get that kind of objective testing necessarily in brain fog or weakness. So, it's a very difficult situation."

Rosenberg said he is seeing more and more patients every day asking for help to apply for disability benefits. He said a holistic treatment approach has been helpful for many of his Long COVID patients, and he wants people to know there is hope.