Living With COVID: A Long Hauler’s Journey
Key takeaways:
Amy Watson coined the term COVID “long hauler.” More than a year later, she’s still fighting symptoms that have altered her life.
Amy’s Facebook group, Long Haul COVID Fighters, has helped thousands.
Despite wider awareness, Amy says long haulers need to advocate for themselves.
Amy Watson remembers the day it began: It was March 15, 2020, and her hometown of Portland, Oregon had just gone into a COVID-19 lockdown.
She woke up feeling “pretty rotten,” and developed headaches, a dry cough, and an unrelenting fever. With COVID testing still scarce for the general public, she took advice to just “hang on and hunker down.” The preschool teacher hoped it wouldn’t last long.
But Amy, now 48, had no idea that what began as COVID-19 would go on to upend her life for the next 600 days and counting.
“I still have yet to be fever free for more than an hour or two at a time,” she said in November 2021.
Amy is among a growing number of COVID survivors who face a dizzying array of symptoms that people can experience 4 or more weeks after first being infected, according to the Centers for Disease Control and Prevention (CDC).
As many as 1 in 3 people who become ill suffer from post-COVID conditions. The widely varying symptoms can include fever, body aches, “brain fog,” and severe fatigue. Some people develop a nervous symptom malfunction known as dysautonomia, which can make “automatic” functions, such as breathing, difficult.
Amy coined the term “long hauler” after she created the Facebook group Long Haul COVID Fighters, which now has thousands of members. Since then, she has learned to manage a chronic and debilitating illness that has altered her life in profound ways.
“The repercussions of this have been pretty severe,” she says.
From COVID to ‘long’ COVID
Amy thinks she first got COVID-19 from a student. She then passed it to her partner and college-aged daughter. But both recovered in days or weeks. Forty-five days after her symptoms started, Amy finally tested negative for COVID. But her health problems were just beginning.
An avid runner and hiker, she decided to venture to a state park after finally testing negative. Her heart rate skyrocketed, and she was dizzy and sick to her stomach.
“What is going on?” she asked herself. “I don’t know what’s happening in my body. But this is definitely not normal.”
She began experiencing daily fevers and chronic migraine headaches. She is nauseous every day. And she has been diagnosed with mast cell activation syndrome (MCAS), where immune cells release an inappropriate amount of chemicals, causing gastrointestinal and allergy-like symptoms.
Her autonomic nervous system, which regulates involuntary processes such as breathing, heart rate, perspiration, digestion, sleep, and body temperature, began misfiring. That meant constant nausea, dizziness, and trouble digesting foods, among other symptoms.
But that wasn’t all. Still more symptoms appeared, including cognitive impairment and memory loss. She’d forget words, names, or birthdays, undermining her self-confidence.
She struggled to find a cause or get a diagnosis. “Huh, weird,” was one reaction she got from a primary care doctor.
She underwent blood tests for leukemia and lymphoma, among other tests, as physicians tried to figure out what was wrong. But she says she felt “pushed to the back burner” by a medical system overwhelmed by the influx of acute COVID patients.
“There wasn't knowledge, the time, the bandwidth, the staffing to deal with us long haulers,” she says. “It took a while for the medical community to accept that this was the reality, and that people were not recovering from COVID.”
Her struggles were isolating and scary. She reached out to social media for shared experiences and tips for navigating it. But amid rising deaths from acute COVID, she felt patients with long-term symptoms were on their own.
“My partner's like, ‘Well, why don't you start a group for people like you?’” she recalled.
Community of ‘long haulers’ brings support amid struggles
On her table at home was a trucker cap that she’d worn on the day she tested positive for COVID. An idea struck her. The cap made her think of long-haul truckers, and long-haul journeys for those battling post-COVID conditions.
“You're in this for the long haul; there doesn't seem to be any end in sight,” she thought to herself, naming a new Facebook group Long Haul COVID Fighters.
“I thought maybe there'd be like 20 people in this group. And in the first month, I think we hit about 300. And it just exploded from there,” she says.
People started to self-identify as long haulers. The media picked up on it. She says that in September 2020, Dr. Anthony Fauci, the nation’s top pandemic public health official, testified before Congress and mentioned long haulers as a patient group.
“Now, there are people from 100 countries around the world experiencing the same types of symptoms,” she says, feeling like, “it’s not just me.”
She formed other groups, including one to focus on medical and scientific collaborations. Amy’s three Long Haul COVID Fighters groups now have more than 15,000 members combined.
In the patient groups, people poured out heartbreaking struggles. They talked about strange and inexplicable symptoms and of “being gaslit by their doctors,” who initially weren’t sure COVID caused their symptoms, Amy says.
“People have lost relationships, they've lost jobs, they lost their homes, their livelihoods,” she says. “I have had so many people in my groups who were just literally at their wit's end. I've definitely talked some people off of some actual ledges when they just did not have any support in their real lives.”
Learning to navigate life and healthcare
In the last 20 months, Amy has learned a lot about navigating medical care, dealing with insurance, and juggling finances. She’s had no other choice.
She’s now on an array of medications to manage her new chronic conditions, which include hypertension and headaches. She has altered her diet significantly, and typically only eats one meal a day. She switched to a new primary care doctor who is heading up a specialized program for long COVID patients.
She has had to do much of the detective work on her own. That included seeing a neurologist in Seattle who specializes in autonomic nervous system disorders. There, she was diagnosed with POTS (postural orthostatic tachycardia syndrome, a condition that causes the heart rate to spike when a person changes position) and MCAS. She had to pay out of pocket because her insurance denied an out-of-network referral to see a neurologist with autonomic expertise, she says.
Last summer, she underwent months of occupational, neurological, physical, pain management, and mental health therapy to get to where she could manage her symptoms enough to go back to work. She returned to teaching part time at a preschool where she has worked for 17 years.
It’s still difficult, she says, recalling one day when she suddenly realized she was “sweating buckets and totally nauseous,” leading one of her students to ask her if she was feeling OK.
She takes more than 20 prescriptions and supplements. The stress has taken a toll on her physical and mental health, as well as her finances.
“I don't have the same salary working 25 hours a week that I did (working) at 40” hours, she says. “I’ve taken a huge hit financially, but at least I still have a job and a roof over my head.”
Since her symptoms first came to light, diagnosis of long COVID has improved, she says. According to the CDC, “experts around the world are working to learn more about short- and long-term health effects associated with COVID-19, who gets them, and why.” Clinical definitions of the condition have been developed, research has ramped up, and support groups have proliferated.
She’s fully vaccinated and urges vaccination for all eligible individuals. “You do NOT want to end up a long hauler,” she says.
Amy isn’t sure what’s ahead. According to the support group Body Politic, some patients make full recoveries, while others continue to suffer more than a year after their first symptoms.
Still, she thinks fellow long haulers need to advocate for themselves: “You’ve got to be a squeaky wheel,” she says, advising people to not “give up, stay home, and be miserable. And don't let anyone discount your experience.”
For long COVID patients, validation is important, she says. But it’s just the beginning.
Why trust our experts?
