Three years after the World Health Organization declared the Covid-19 pandemic, life has not returned to normal for millions still struggling after their initial infection. For those with long Covid, health challenges are only part of the battle as they endure social stigma and endless bureaucracy in their quest to get better.
Federal data suggests up to 30% of those who get Covid either experience persistent/returning symptoms or develop new symptoms, even after mild or asymptomatic cases. That figure translates to possibly 23 million Americans with the chronic and potentially debilitating illness.
“People call this a ‘mass-disabling event.’ This is the largest number of newly disabled people in a generation,” says Ryan Prior, a former CNN journalist who covered the pandemic and author of The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever.
As much of the world has dropped pandemic precautions, advocates say long haulers have been left behind at their most vulnerable time, with many having to care for themselves or others while struggling to make ends meet.
“People are suffering and they need help now,” says Diana Güthe, founder of Survivor Corps, a grassroots non-profit that supports and advocates for individuals with Covid-19 and long Covid. “People need to get back to work and their kids are sick and they’re taking care of their parents. And it’s no way to live.”
Across the board, long Covid patients say help is hard to come by, prolonged by red tape as well as a lack of urgency and understanding.
“It’s hard to get support from your employers. It’s hard to get support from the state and disability. It’s hard to get support from health care providers,” says Gina Assaf, co-founder of the Patient Led Research Collaborative (PLRC), a non-profit focused on patient-centered long Covid research.
Patients, survivors, and advocates say there are ways you can support the long Covid community, whether you choose to lend your time, voice, or wallet.
How to help individuals with long Covid
Be compassionate: Many with long Covid feel stigmatized or invalidated by a world eager to move past the pandemic. So at a most basic level, Prior suggests, begin from a place of empathy.
“There is a sort of toxic idea that people with complex illnesses or invisible illnesses are making it up or faking,” Prior explains, so it’s important to communicate “you understand that they’re going through something and that you see them, even if you can’t really fully understand what they’re going through.”
Güthe says it’s also important to acknowledge the seriousness of the situation. “Don’t take this lightly. The consequences can be devastating.”
Help out around the house: Nearly three years after developing long Covid, Assaf considers herself lucky to be “80% improved.” But with limited energy, she carefully paces herself.
“I can’t do a full day where I could go and work full-time, clean my house, just daily living,” Assaf says. Pushing herself too far risks triggering POTS (postural orthostatic tachycardia syndrome), which causes her heart rate to soar upon standing, or relapsing into exhaustion.
“It’s a radically different feeling than the fatigue you have from working out or from not getting enough sleep,” explains Prior, who says his long Covid experience paralleled his history with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). “It feels like your body’s ability to produce energy has just completely shut off.”
As a finite resource, minimizing energy use is crucial. Delegating errands like bringing food or picking up a shopping order helps conserve energy, as does help with cooking or cleaning, according to Prior.
“All that stuff becomes overwhelming. And insofar as you can pick up a handful of relatively basic tasks and offer to do those for somebody, that could be pretty life-changing,” Prior says.
Help set up medical appointments: Along with fatigue, cognitive impairment – often called “brain fog” – is another hallmark of long Covid. The neurological impact can affect reading, problem solving, decision making, or processing information, all of which makes navigating the already complex health care system even more difficult.
“It’s burdensome, especially with the kind of symptoms we have when it comes to cognitive overload we get,” Assaf says.
Now that many long Covid clinics have closed, it’s also difficult to find physicians and health care providers who specialize in post-infectious diseases. “Those are all filled up,” Assaf adds. “You’ll have to wait, like, a million years to see them.”
For those who want to help, Prior recommends offering to review health insurance information with long haulers, schedule their appointments or drive and accompany patients to the doctor’s office. Other practical ways to help include calling the pharmacy and picking up prescriptions.
Respect their comfort levels: Assaf says like many in the long Covid community, she is trying to avoid getting the virus again which could set back years of progress in her recovery – or possibly leave her worse off.
“I feel at risk. I really don’t want to get reinfected. I know that my body doesn’t react well to Covid,” says Assaf, who is researching the impact of reinfections in her work with PLRC.
If you are meeting someone with long Covid, ask what would make them more comfortable. Prior says wearing masks and avoiding crowds are common requests, as are maintaining social distance, locating a meeting space with improved ventilation, or gathering outdoors.
Doing so will benefit you, too. “Don’t risk getting it,” Assaf cautions. Although it’s harder now, she adds, “I would still take as many precautions as possible. It is not fun to go through at all.”
Reach out: With many long Covid patients who avoid public spaces, maintaining social connections in other ways is especially important.
Prior says regular offers to talk on a video or phone call can ease isolation and “help provide them hope because a secondary form of depression can set in.”
“Some people are suffering so severely that they don’t see a way out. So understanding that although Covid hasn’t necessarily killed the person by the stuff that you normally hear about, the respiratory tract, these downstream effects can still be deadly,” he says.
According to Güthe, thousands of Survivor Corps Facebook page members have reported suicidal thoughts. But “do not think of this as a death sentence,” she emphasizes; while some damage appears permanent, “it’s not as foreboding an outlook as it was a year and a half ago.”
Implement work accommodations: Employers of long Covid patients can help set up their employees for a better chance of success by taking their energy levels into consideration.
Offering a remote work option is particularly powerful, Prior says, because “a lot of people just lose all their energy to traffic around the commute and just getting to work.”
Adjusting work shifts to better align with an employee’s circadian rhythm can also help since many with long Covid experience insomnia, unusual sleeping patterns, or other sleep disorders, Prior adds.
How to help the long Covid community
Donate to research: Advocates acknowledge some progress over the last three years. But much more work remains, like identifying long Covid biomarkers and developing treatments that address the root cause.
“In general, it does seem like there’s some headway in understanding why it’s happening, although it seems very complex,” Assaf says, noting PLRC’s mission now is to “facilitate this rigorous and timely research” with patients in the driver’s seat that could benefit millions like herself. “I really would like to understand what is going on biologically with me.”
“Have we made progress? Yes, absolutely, 100%,” Güthe says, referring to the work of Survivor Corps. Frustrated by the federal government’s grinding bureaucracy, she says the long Covid community has become the driving force pushing for answers. “We are crowdsourcing this disease from the ground up.”
Participate in research: Studies, trials, and surveys are underway at the national and state levels to better understand Covid-19 and long Covid. You may be eligible regardless of whether you’ve had Covid, and as a bonus, many studies can be done remotely.
Furthermore, Güthe says the data may have far-reaching benefits for other post-viral illnesses.
“What is learned from long Covid could very much help those with ME/CFS and Lyme disease and these other diseases that affect more women than men and have been underfunded and overlooked for far too long.”
Use your voice: Prior suggests getting involved in the democratic process. Call your elected officials to advocate for things like more long Covid research funding and disability protections.
“Disability rights are civil rights. They are human rights. And people with disabilities are equally as good and equally as valid as anybody else,” Prior says. “We all have a God-given right to pursue life, liberty, and happiness. And people with disabilities deserve the ability to have a happy life.”
Don’t forget: As the pandemic fades from headlines, long Covid patients still face an uncertain road.
“They’ve been forgotten,” Güthe says, but “know that there are resources available for them and that people are getting better slowly.” She adds, “There is hope.”