A third of patients have long-haul COVID, It's 'impacted all areas' of a Springfield mother's life

Holly Harrison contracted COVID-19 in June of 2020. She was young, healthy, and had mild symptoms. She thought she would be fine. But a year-and-a-half later, she's still sick.

The Springfield resident hasn't tested positive for the virus for more than a year, but she still suffers from symptoms that leave her unable to work or do much of anything for more than a few hours.

The 37-year-old is one of many COVID survivors suffering from 'long COVID', a still mysterious version of the disease that leaves many sick long after the infection has left their body.

According to Mountain Grove family physician and former President of the American Medical Association David Barbe, current research has found about a third to 40 percent of those infected with COVID have these long-term symptoms.

Common long-term symptoms associated with long COVID include anxiety, depression, chronic fatigue, shortness of breath, body aches, and a lack of taste or smell.

While these symptoms could seem mild on their face, Barbe assured they can often be massively debilitating to a person's life.

"This is not just feeling bad," he said. "It's impacting their livelihood, their ability to work, their ability to carry on their day-to-day responsibilities. Even if you're a homemaker or you're trying to support your kids and your spouse, some people just are not able to do that. So, this has significant ramifications — social, economic, personal ramifications that extend beyond somebody just feeling bad."

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According to Barbe, recent research suggests that 22 percent of those experiencing long COVID symptoms are unable to return to work or must severely restrict their working hours.

In fact, long COVID was recently recognized as a disability under the the Americans with Disabilities Act, which means that those whose symptoms "substantially limits one or more major life activities" are entitled to accommodations from their work and from public amenities.

What is long COVID?

More severe symptoms of long COVID tend to occur among those who had severe symptoms initially, according to Barbe. Because children and adolescents tend to not have those severe symptoms, current research suggests they are much less likely to suffer from long-haul COVID.

The disease is also difficult to treat — largely because doctors still do not know its cause.

Some patients diagnosed with COVID could have long-lasting damage to their lungs, but that is not what is meant by 'long COVID.' Doctors know how a lung or a heart could be damaged while hospitalized with COVID.

Conversely, long COVID is defined by symptoms which should get better with time — but for some reason don't.

"People with long-haul COVID are more those people who should have recovered. They expected to feel better. They are those people who we as doctors expected to recover but didn't," Barbe said.

Current speculation around long COVID is in some the virus triggers an auto-immune response that "cause the body to sort-of attack itself." But Barbe emphasized this is just a hypothesis.

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But confusion around its cause makes long COVID more difficult to treat.

"If you know the cause you can directly treat the cause. Right now we’re mostly limited to treating the symptoms themselves," he added.

Researchers also don't know how long long-term symptoms last. According to Barbe, current studies do not show long COVID symptoms dissipating over time, but almost all those studies only follow patients for a six-to-nine-month period.

"Usually the study concludes and then you don't know what happens to those patients at 12 months or 18 months. We don't know how long these symptoms will last," he said. "The hope is and the belief is that the symptoms will improve over time, but we don't yet have that information."

Long COVID Symptoms 'initially didn't seem so bad'

Harrison's symptoms are still as debilitating as they've always been 18 months after she first contracted the virus.

At that time in June 2020, her symptoms were very mild. She did not go to the hospital and experienced about two weeks of a low grade fever, muscle aches, joint pain, and fatigue.

"Initially, it didn't seem so bad. And after a few weeks, I thought I was getting better. But then it suddenly shifted to much more severe.

By mid-July, Harrison went to the emergency room.

"I had severe fatigue. My muscles felt like they were burning. I had severe difficulty standing, severe joint pain, brain fog. I thought I had recovered. It was all of a sudden," Harrison told the News-Leader.

But Harrison no longer tested positive for the virus, so she was sent home with instructions to rest.

The remainder of 2020 was "probably the worst half year of my life," Harrison said. Her main symptom going forward was severe and chronic fatigue. She couldn't stand, she had to stay in bed, and at times she couldn't form sentences.

A marriage councilor — Harrison was unable to hold Zoom sessions for clients for more than an hour a couple times a week.

And when she would work for that short period, Harrison would have a massive uptick of flu-like symptoms for the next day or two.

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"I didn't understand what was happening to me. I just didn't get it. I was really confused because I kind of expected that I would just get better," Harrison said of her first few months with long COVID symptoms.

"I just continued going back to the doctor. And I would say, 'I'm 35. I used to walk for miles and weight lift and do yoga. I'm a marriage and family therapist with my own private practice. I'm used to being busy all day.' But they really couldn't offer me much help."

Less than a year into the pandemic, knowledge of long COVID among doctors was far from certain. Barbe told the News-Leader that doctors should now at least be able to recognize long COVID, even if adequate treatments are still out of reach.

"There must be very few physicians now that don't recognize that this is a real thing. It isn't just in their head. It's very real," he said. "Just because we don't understand it, doesn't mean that it's not a real problem. And until we do understand it, we need to continue to give patients our best and most compassionate care — manage the symptoms to the best of our ability and I think support our patients emotionally."

Barbe added that of the main symptoms of long COVID, chronic fatigue is one of the most difficult to treat.

"Fatigue is a frustrating symptom. It doesn't have as direct of a treatment. We don't have as good a handle on chronic fatigue generally as we do shortness of breath, for example."

That "brain fog" and fatigue has remained with Harrison to this day. But in 2021, she was diagnosed with post-exertional malaise, which she wants others to know can be an early sign of long COVID.

"The hallmark of this malaise is when essentially you just do a little bit of work either physical or mental, emotional, and then in 24 to 48 hours, you get this massive uptick and symptoms of muscle weakness, muscle pain, flu like symptoms, difficulty standing. And through speaking with others online, I know it's very common with long COVID."

A recent long-hauler

That symptom is what led Laura to realize she might be suffering from long COVID.

Laura, who lives in Southwest Missouri and did not want her last name used, only contracted COVID-19 three months ago.

A mom in her 50s — she was healthy and also had an initially mild case.

But 11 weeks on, she still suffers from "shakiness and tremors, dizziness, racing heart, heart palpitations, fatigue, generally not feeling well or malaise and increased anxiety and memory lapses or fogginess."

"Simple tasks are difficult, exercise is out of the question," she told the News-Leader.

It's only been in recent weeks that Laura has resigned to the fact that these symptoms might not go away in the near future.

"It’s been really tough. Anyone that knows me knows I am someone who has tried so hard to keep myself and family healthy. Being aware of reports of Long COVID from the beginning of the pandemic, I knew it was not something one would want to go through. I took a lot of precautions. So to actually get COVID after 18 months of cautious behavior, and then to slowly realize my health was not improving, week by week, was (and is) very difficult. It can be hard to stay positive."

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Despite being "very ill," Laura says all her labs are within a normal range.

"I love my doctors but I have been passed back and forth between them, as no one seems to know how to treat long COVID. And my labs aren’t severe enough to be seen by a specialist. It is very frustrating."

Also, Laura received both doses of the COVID vaccine before contracting a breakthrough case. She credits her vaccinations with preventing a more severe version of the acute illness.

"Without my two vaccinations, I believe I could have ended up in the hospital or worse..." Laura told the News-Leader. "Eventually, I have hope that my health (and others who are suffering, even more than myself) will return to their pre-COVID selves, or close to it. I try not to worry long-term, rather, focus on what I AM able to do each day."

In his interview with the News-Leader, Barbe emphasized the best protection against long COVID is to not contract the virus in the first place — and the best way to do that is to get vaccinated.

"Avoiding COVID is the best way to avoid long haul COVID... And you avoid COVID by getting vaccinated and getting boosted," Barbe said.

He also noted that its still recommended those experiencing long-haul symptoms to receive the COVID vaccine.

"Long-haulers are eligible for vaccination. We don't have enough science right now, to know whether that has any negative effects. We don't think it does. The anecdotal or small studies suggested that it isn't a problem. But the guidance to wait to feel little better before getting your vaccine is mainly related to that acute phase of the illness," he said.

Barbe noted that long-haulers should consult with their physicians before getting vaccinated but that recommendation could change on a case-by-case basis.

COVID impacted 'all areas of my life'

Though the vaccine was not available when she first got sick, Harrison told the News-Leader her entire family is fully vaccinated — including her six-year-old daughter.

"My husband and I decided to get vaccinated as soon as it became available. We have also both received our booster shots," she said.

Harrison noted that some research has suggested the COVID vaccine can improve long-haul symptoms, but her illness has not changed since being vaccinated.

"My sickness has impacted all areas of my life. I went from being a very active person in my mid 30s. Being able to do things all day — exercise, walk for miles, lift weights — to barely being able to stand to shower. I’ve mostly been in my bed, especially for those six to nine months."

Recently, Harrison decided to stop seeing therapy clients and permanently close her private practice.

"It wasn't really a choice to adjust to me not being able to work very much and so there have been, and continue to be, definite financial worries for me and my husband. I wonder if I'll ever be able to work like I used to or be able to bring in an income like I did in the past."

But her biggest worry and regret is the time she has lost with her family.

"I look back — I'm so sad about the time I missed with my family when I was very sick. Because I had — I really couldn't tolerate being around other people for any long amount of time. I spent so much time in bed with the curtains closed and I regret that lost time."

This article originally appeared on Springfield News-Leader: How long-haul COVID impacted this Missouri mother's life