Coronavirus (Covid-19) long-haulers and the healthcare system: Her doctors didn’t believe she was still sick

Filed Under: Costs, Health plans, Patients

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After suffering for days with chest pain and difficulty breathing due to Covid-19, Candace Taylor finally fell asleep in a recliner one night in late March. She didn’t know at the time, but she would have to sleep in that recliner for the next three months.

Taylor, 38, is one of a growing number of Covid-19 “long-haulers” whose condition remains so severe that they’ve been unable to return to work and have had to apply for disability benefits to stay afloat.

“I couldn’t lay flat at all,” said Taylor “Every time I would try to lie down, the chest pain was waking me out of my sleep where I could hardly breathe.”

It is unknown how many patients struggle with Covid-19 long-term, or how many now suffer with a disability, but some scientists are making the argument that the medical establishment should be tracking them.

While Taylor is able to sleep in her bed now, she still struggles with debilitating symptoms. Her visits to multiple specialists have done little to ease the fatigue, body aches, gastrointestinal trouble, rapid heart rate, concentration issues, chronic hoarseness and continued chest pain.

AN INCREASED RISK

About a week before testing positive for Covid-19, Taylor, who has an autoimmune condition that put her at a higher risk for both becoming infected and for complications, asked her supervisors in the business office at Northside Hospital in Atlanta, Ga., if she could transition to working from home during the height of the pandemic. Taylor said she feared that it was only a matter of time before she became ill.

She was right.

Taylor said she believes she contracted Covid-19 at work. In the weeks before getting sick, she was working 10- to 12-hour days in the hospital’s billing department – and not going anywhere else. She said she remembers the exact date she knew something was wrong.

“On March 23, I had to call off work because the pain was unbearable,” Taylor said in a video interview. “I developed a dry cough, and I immediately lost my sense of taste and my smell.”

It was more than a day before she was able to get a referral for a test at a drive-through testing site. It was positive. Taylor continued to have fevers and severe aches for weeks.

“I’ve never experienced that much pain before in my life,” she said. “And then after that, the chest pain just wouldn’t go away.”

After a month with her symptoms showing no signs of stopping, Taylor went for another diagnostic Covid-19 test. When the test came back negative, she felt some hope for the first time in weeks.

“I was thinking O.K., after the negative test my symptoms will stop,” she said.

But that’s not what happened. Taylor’s symptoms not only continued, but she went on to develop new ones.

“I ended up having dizzy spells, internal shaking. My left ear started popping, I had tachycardia,” she said, referring to a condition that makes a person’s heart beat more than 100 times per minute.

Taylor ended up in the emergency room, but she got no help.

“I’d never experienced being dismissed or gaslighted,” she said. “The E.R. doctor was like, ‘You’re not going to die within 48 hours,’ didn’t even touch me.”

After taking her vitals, the doctor sent Taylor home again. She said this was despite the fact that she was suffering with intense pain and had no answers as to why.

“I didn’t know if I was going to make it,” she said. “I was thinking about a will. It was just a very scary experience for me. But I came home and tried to stick it out.”

APPLYING FOR her DISABILITY BENEFIT

By this time, Taylor had been out of work so long, she had to apply for disability benefit through Cigna, her employer’s third-party insurer. But that process has also turned out to be anything but simple. While she received disability payments from April to May during her initial bout with Covid-19, they were not extended after her illness became long-term. Despite fatigue and chest pain so extreme that she can barely shower or wash her clothes some days, Taylor is still fighting for her benefit.

She was referred to a pulmonologist who reviewed a lung CT scan that Taylor had had at one of her previous emergency room visits. Despite her long-term breathing difficulties and chest pain, the scan came back normal. And that normal test would cause problems of its own.

Candace Taylor

“She refused to fill out my disability paperwork because my CT scan was normal,” Taylor said of her pulmonologist. This, Taylor said, was an emotional blow.

“I was more than tearful,” said Taylor. “I broke down crying.”

Cigna denied Taylor’s disability claim.

“I haven’t gotten paid since May and I have no income at all coming in at this moment,” Taylor said.

She subsequently hired a lawyer and is appealing Cigna’s decision. A representative from Cigna told ClearHealthCosts that they will “continue to work with Ms. Taylor to address her concerns specific to her disability benefits.”

In the meantime, Taylor found a few things that would ease her breathing troubles but only temporarily.

“I was doing steam treatments,” she said. “I was making lemon, orange, ginger and garlic over the stove.” But one night, it wasn’t enough and Taylor knew she had to go back to the hospital. “When I was trying to cut the lemon, I couldn’t even use the knife to cut the lemon because my chest was that painful,” she said.

Back in the Emergency Department

Taylor’s third visit to the ER was better than the first two.

“That ER doctor did take the time to listen to me,” she said.

But in the end she was, again, left with no cure and no answers.

“I got the same response, that Covid was new; they were still learning about it,” she said, adding that they said they didn’t know what to do at that point. “So, I was sent home again.”

It was then that the emotional toll of being a Covid-19 long-hauler started setting in.

“I got very discouraged,” she said. “It was like I didn’t really know what else to do.”

With no idea where she would turn next in her search for treatment, Taylor said she resolved not to return to the emergency department.

“Even though I was in pain, consistently, I didn’t go back,” she said. “I knew that they couldn’t do anything.”

But soon, the acute phase of Taylor’s Covid-19 illness seemed to return a month after her initial bout.

“I was developing headaches again and round-two of [gastrointestinal] symptoms,” she said. “I was having, like, a relapse.”

Taylor got tested again to see if the virus was still active. The test was negative, so she got tested for antibodies.

“I did have antibodies for Covid,” she said. “But I’m still suffering at this point.”

Even after months of documented illness, Taylor said she still runs into healthcare providers who don’t take her symptoms seriously.

“My primary care doctor, I was kind of dismissed by him as well,” she said. Her doctor, it turned out, had had Covid-19 as well. Taylor said that because her symptoms didn’t look like her doctor’s, he assumed she must have been wrong about them.

“When I was telling him about my symptoms, that they lasted more than 14 days, he said, ‘Well, I’m high risk, and I was asymptomatic and I’m fine,’” Taylor said. “And I was letting him know, ‘Well, I’m not fine.’”

Like many other long-term sufferers of Covid symptoms — they call themselves long – haulers — she learned on online support groups that her illness has followed the trajectory of others’ illnesses. Those support groups, too, are full of people who feel dismissed by and gas-lit by the medical profession — perhaps in part because at the very beginning of the pandemic, the narrative was either you died or were seriously ill from Covid, or it was a fairly light respiratory illness that was over in two weeks.

SOME PROGRESS, THEN LOSING HER HEALTH INSURANCE

After months of dead ends, Taylor finally got a referral to an infectious disease specialist. It was with him that she finally started to get some answers and make some progress.

“He is an incredible and compassionate doctor,” Taylor said.

The specialist diagnosed Taylor with multiple tiny blood clots throughout her body. Clotting abnormalities like these microclots can cause dizziness, and pain when moving around — symptoms that Taylor had. By May, scientists had started to see these microclots manifest in some Covid-19 patients. Her doctor prescribed a blood thinner to break up the clots, but neither Taylor nor her doctor knew at that point how long her treatment would take.

Now, having finally gotten some answers, Taylor faces a new dilemma. While she has found an effective clinician, she doesn’t know if she will be able to continue seeing him. Earlier this month, her health insurance provider, Humana, wrote to let her know that her benefits had ended two weeks prior, but that she may be eligible for COBRA, a health insurance program that is generally for people who have lost their jobs.

The only problem is that Taylor has not been let go from her job at Northside Hospital. When asked for a comment, Humana referred us to Northside. Northside has declined repeated requests for comment.

While Taylor is making headway with some of the long-term effects of the virus, others are as severe as ever.

“I’ve been hoarse now for almost three months,” she said. “Sometimes I can have a strong voice for 15 minutes, sometimes I won’t. Sometimes in the middle of a call, my voice can go.”

Taylor said among the Covid-19 symptoms she has had to endure, her chronic hoarseness has been the most devastating.

“I have no communication,” Taylor said. On difficult days dealing with long-term Covid-19, Taylor said she often cannot even call a loved one or speak to her counselor. “Because of that, my quality of life is now poor.”

“You go through an emotional rollercoaster,” she said. “You go through being sad because you can’t do normal daily activities, or sometimes I get angry about how I was treated by a doctor who I was supposed to be helped by.”

HELP FROM SUPPORT GROUPS

Throughout the past six months, the effect of Covid-19 on Taylor’s life has been profound.

“It’s been an extreme journey, a difficult journey,” she said. “I really didn’t think I was going to be here, but I’m grateful for life.”

She credits Covid-19 support groups like the Long Haul Covid Fighters, Body Politic and others she belongs to with keeping her going.

“It has been like a breath of fresh air to know that you’re not alone, that you have a support system that understands you, that won’t, you know, gaslight you or dismiss you,” she said. “I don’t really think I could have made it without being in Covid support groups.”

Taylor said that thanks to help from other Covid-19 long-haulers, she tries to share her story as much as possible to help others feel less alone.

“I am trying to use my voice as much as I can to encourage others to use their voice, to not be ashamed that they contracted the virus because it’s not their fault,” she said.

Indeed, Taylor wants other Covid-19 fighters to celebrate their small victories.

“Keep on fighting,” she said. “There have been days where I was willing to give up. But here I am on my journey.”