By Philip Reed
It’s been more than one year since Financial Program Analyst Lisa O’Brien started feeling the symptoms of COVID-19. For many who had contracted the virus that long ago, the worst would be behind them. For long haulers, however, the symptoms remain.
“Tens of thousands of people in the United States have lingering illness following COVID-19,” says Dr. Anthony Komaroff, editor in chief of Harvard Health Letter. “We call them post-COVID ‘long haulers.’ Currently, the condition they are suffering from is known as ‘long COVID,’ although other names are being proposed.”
Komaroff said that long haulers “continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body.”
For O’Brien, and for many others, “three months after the onset” is a distant memory. They continue to struggle and suffer to this day.
“Before COVID, in 2019, I made it a goal to travel somewhere once per month, even if it was just for a weekend getaway,” she said.
O’Brien was in her early 40s and lived an active lifestyle. She was taking no medications and had always been generally healthy. She enjoyed traveling and experimenting with new hobbies, such as Irish River dancing.
“I was trying to redefine who I was as a woman with grown kids,” she said.
One of her planned activities was a trip to Hawaii in late February 2020. Booked in advance, O’Brien had no idea it would end up overlapping with the start of a pandemic. As her trip drew near, she started to hear about the virus, but went anyway.
“I didn’t think it was that big a deal,” she said. “At the time, before we really understood the danger, many people heard about it and dismissed it.”
She started to feel ill March 11, 2020, just after she returned. The U.S. had not yet started restricting travel, and her flight had a layover at Los Angeles International Airport, which was later identified as a COVID-19 hot spot.
“I was having symptoms, but I chalked it up to jetlag,” she said.
Bad to worse
As COVID-19 was still not fully understood, what she was feeling didn’t match up with what she was hearing about on the news.
“I never had a fever,” she said. “I never lost my sense of taste or smell. The symptoms I had were not the symptoms we were told to watch out for.”
Her initial symptoms were generally mild, but they eventually went further. Through the course of her infection she suffered from malaise, sore throat, fatigue, intestinal issues, chills, burning lungs, shortness of breath, intense body aches and severe fluctuations in heart rate. She also developed blood clots in her arm and lung.
Due to an early shortage of tests and criteria restrictions, she wasn’t able to get tested for COVID-19 until beyond the timeframe that the virus would have still been active. The result was negative, leading doctors to later dismiss her concerns or misdiagnose her, even though early testing had accuracy rates as low as 60%.
For seven weeks, those symptoms ebbed and flowed. Then, during week eight, her symptoms got substantially worse.
“My autonomic nervous system just went haywire,” she said. “I started having internal vibrations that I could feel through my whole body. I started having erratic heart rates, anywhere from 30 to 221 beats per minute.”
In addition to all of this, O’Brien started to develop cognitive issues.
“I began experiencing short-term memory loss, having trouble with word recall,” she said. “I could explain the word I was looking for, but I couldn’t get it to come to mind. It definitely affected my brain.”
She also developed mast cell activation syndrome, or MCAS.
“Mast cells are responsible for allergic reactions,” she explained. “Hives or anaphylactic episodes, that’s the mast cells at work. Post-COVID, individuals are ending up with MCAS. They are developing allergies they never had before, to fruits they’ve eaten their whole lives or to perfumes they’ve always used. It’s crazy.”
As time passed, O’Brien ended up feeling better in some ways, but continuing to struggle in others. Her heart rate began to calm down, but a year later she is still facing cognitive issues and brain fog. Previously physically active, O’Brien now finds herself drained from even small amounts of exertion.
“It’s awful,” she said. “I have insomnia and fatigue. It’s not like I’m just tired; my body is not producing the energy that I need to function. I can sleep for hours and hours and still wake up and feel the fatigue because my body’s not working like it should.”
One fortunate development was that she did not have to endure this confusion and frustration alone; in June 2020, she started an online support group for long haulers in Utah. That group now has around 2,700 members.
“I was having such a hard time getting doctors here in Utah to believe me and take my situation seriously,” she said. “I knew there were going to be others who would go through the same thing that I went through, not being believed, being dismissed by doctors and family members. I wanted people to know that they were not alone. I wanted a place where we could share local resources. I also wanted to show Utah that this was going to be an issue.”
O’Brien attempted to contact her state officials and representatives but did not feel heard by them.
“We had to be proactive and make a plan,” she explained. “How do we focus on their long-term health and rehabilitate these people and get them back to their previous lives? In 2020, I probably went to 80 different doctor appointments. I saw we were going to overwhelm the healthcare system. There wasn’t a lot of education about our situation. I wanted to show them, look, this is going to be a problem.”
O’Brien and other members of the long hauler group exchanged information on doctors who could help them and offered emotional support to each other.
“The biggest blessing for having that group is knowing that you’re not going through it alone,” she said.
Seeing the success of the group, O’Brien next created COVID Advocators for Research and Education, or CARE.
Affliction to activism
CARE is a non-profit with the intention of supporting research and educating the public on the long-term risks and effects of COVID-19. O’Brien hopes to educate patients who are going through it right now and may not know what to expect.
“I want the CARE website to be a single place you can go to find information, studies people have done and other resources,” she said. “It’s a work in progress. I plan to have it be kind of a Long Hauler 101. I want to upload every bit of information and resource that I’ve gathered over the past year.”
Topics will include how to properly pace for exercise, diet suggestions and guidance for COVID-19 long haulers. She would also like to help others who are struggling professionally as a result of the pandemic.
She explained that having a resource could reduce some of the confusion people feel when their symptoms don’t necessarily line up with the symptoms of others. She mentioned that some members of her group have lost their sense of smell, for instance.
“They can’t taste their favorite food anymore,” she said. “Every single thing they eat tastes like nothing. Or now their favorite foods smell putrid, like vomit or diesel oil. Others have had their sense of taste changed, so that some stuff doesn’t taste right. Some people are dealing with profound fatigue, so much that their body feels like cement. Some people have lung issues. I dealt with autonomic nervous system dysfunction, also known as dysautonomia.”
O’Brien understands the need for connection and support through difficult times such as these, and she makes an effort to provide that for as many sufferers as possible.
“We don’t have a lot of answers,” she said. “We don’t know if we’ll ever return to who we used to be. If the pandemic were to end tomorrow, most people would get to back to their normal lives, but I am not well enough to go back to my normal life.”
O’Brien has also helped establish a number of treatment programs. In November 2020, she and other long haulers met with researchers at the University of Utah to discuss research efforts and the need for a post-COVID care clinic.
“The researchers are applying through the National Institutes of Health to participate in the Long COVID studies and a post-COVID care clinic should be open in June, which will take patients from all over the country and have a telehealth option,” she said. “This is something we’ve pushed for since August 2020.”
She also worked with the staff of a local medical non-profit, who are experts in post-viral illnesses on their research efforts and coordinated patient participation for their own post-COVID care clinic.
“It launched in February and will take on 100 patients,” she said. “I was their very first patient.”
Even through this work, the scope of her affliction is still being determined. At a recent appointment, they officially diagnosed her with postural orthostatic tachycardia syndrome and orthostatic intolerance.
“I also meet all the criteria for myalgic encephalomyelitis, sometimes referred to as chronic fatigue syndrome but it involves so much more than just fatigue,” she said. These diagnoses explain many of the issues with which she struggles and could help others who suffer as well. “These are potentially lifelong chronic illnesses for all of us, but the doctors at the clinic are optimistic about our recovery because of the early intervention. Nobody can guarantee that, though.”
The longer the pandemic continues, the more O’Brien encourages others to keep as safe and healthy as possible.
“I know that most of us are tired of hearing about COVID and tired of the pandemic, and that’s totally understandable,” she said. “But continue to do whatever you can to minimize your risk of getting this, because you don’t want to risk ending up with the version of COVID that I ended up with. COVID can be life changing and there’s no way to predict which version you will end up with.”
She expressed her gratitude for the patience and understanding that WAPA has shown her.
“There were a couple of weeks when I could barely get out of bed,” she said. “I’ve been really lucky that I have a very understanding team. If you have COVID, it’s important to take time to take care of yourself, because if you don’t it’s just going to make you have to miss more work and prolong your recovery.”
One small silver lining is the fact that O’Brien has been able to offer her support to – and receive support from – others in similar situations.
“I have connected with a lot of people on a personal level and made friends with them,” she said. “And we will probably be friends for the rest of our lives now, because we’ve gone through this traumatic event together. We lost part of our lives together.”
One thing that makes her happy is the thought that, at some point, these experiences could be far enough behind them that they will be able to gather in person.
“I keep telling everyone that one day I want to plan a Utah long hauler meetup when the pandemic is over, to meet in person and celebrate having this group of individuals that we can turn to and who can relate,” she said. “I’ve talked to some of them about planning future trips together, doing some cycling races. We don’t know if we will ever get better enough to do it, but it’s nice to think about.”
Financial Program Analyst Lisa O’Brien has suffered with the
effects of COVID-19 for more than one year, and she is turning
her experience into activism.
O’Brien has been an outspoken advocate for public
education regarding COVID-19 long haulers.
Note: Reed is a public affairs specialist.