On March 11, Heidi Hayward decided to contribute to an increasingly robust Twitter genre: stories of unsuccessful attempts to get tested for the novel coronavirus in the U.S. The 41-year-old was experiencing varying degrees of the now-infamous symptoms—dry cough, shortness of breath, fever—and residing in Snohomish County, where community spread had already been discovered. And, she added in a threaded tweet, she was immunocompromised.
You’ve probably heard the word by now. It appeared frequently when #HighRiskCovid19 began trending, and since COVID-19’s outbreak, Google searches for “immunocompromised” have increased exponentially, mirroring the curve of the virus’s daily case tallies. That’s because news reports and public health officials have emphasized that seniors, those with underlying medical conditions (foremost, lung disease and heart disease), and other immunocompromised individuals are at a greater risk of contracting a severe form of COVID-19. But unlike age, being immunocompromised, or having “a weakened immune system” with “a reduced ability to fight infections and other diseases,” isn’t a neatly quantifiable factor. “Different conditions and medications produce widely varying degrees of immunocompromise, and there are many unknowns in this field,” Centers for Disease Control and Prevention (CDC) states.
In its COVID-19 section, the CDC offers some specific examples: “Many conditions can cause a person to be immunocompromised, including cancer treatment, bone marrow or organ transplantation, immune deficiencies, poorly controlled HIV or AIDS, and prolonged use of corticosteroids and other immune weakening medications.” Similarly, UW Medicine mentions “cancer, solid organ transplant, other immunosuppressive drugs, chronic lung disease, hemodialysis, advanced HIV.”
To be certain, for those whose conditions pop up frequently on such lists, there’s little question as to whether they’re immunocompromised. Joe Booth, a 49-year-old Queen Anne resident, takes an immunosuppressant, Humira, to combat his Crohn’s disease, which is now in remission. When the virus reached the Seattle area, Booth knew he should begin taking precautions. He even got tested after a bout with related symptoms. (It came back negative.) “It’s much more impactful if I do have it,” Booth says.
Yet, like many others', Hayward’s immunocompromised state is less clear. She has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness marked by post-exertional malaise, severe exhaustion, and its unknown cause. For decades, it has confounded the medical community and prompted controversy about its diagnosis. As Mike Mariani, an ME/CFS patient, wrote in a recent piece for The New Yorker, “Because there’s no clear biological cause, doctors recognize the disease by gauging symptoms subjectively, which makes diagnosis, in the eyes of skeptics, unreliable, and has kept away funding for research.” Still, there’s a growing recognition of the condition that affects as many as 2.5 million Americans. Mariani notes that doctors increasingly link ME/CFS to “a dysfunction of the immune system” perhaps triggered by a virus. Hayward stresses the need to further that understanding. “Scientists don't know 100 percent how immunocompromised we are or why or how it works because there's not enough research on it,” Hayward says. “There's a general idea that we're immunocompromised, but since the scientists don't know, the doctors really don't know.”
During the pandemic, Hayward's uncertainty has been exacerbated. She regularly endures flulike symptoms from her ME/CFS; distinguishing between those and a virus can be challenging. At least, Hayward intially thought, she wouldn’t be as exposed to the virus as most. Like many suffering from ME/CFS, Hayward is homebound, spending most of her time in bed. So, when Hayward mustered the energy to attend Disability Rights Washington’s annual day of advocacy in Olympia toward the end of the legislative session, it was a special treat. But days later, when she started developing symptoms of the novel coronavirus, she viewed the trip with a tinge of regret. She had leaned on countertops, shook hands, passed people from around the state. She worried she had crossed paths with the virus.
The Everett Clinic denied her request for a test by phone. She then visited Skagit Regional Health’s respiratory clinic in Mount Vernon. Her symptoms weren’t terrible, but she felt it was her civic duty to get tested, to help stop the virus’s community spread, to let her caregiver and roommate know.
She wouldn’t get the chance. She hadn’t been out of the country or knowingly come into contact with a positive case, and she was told her lungs were fine. No test. She felt “medically gaslit.” “I knew if I went in person that I would have to deal with that, 'Oh, you're one of those people with chronic illness that thinks they have everything under the sun,’” Hayward says.
Allison Fine, the founder and executive director of the Seattle-based Center for Chronic Illness, says there’s “a huge stigma around the impacts of living with chronic illness.” Defined by the CDC as “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both,” chronic illness or disease applies to a broad range of diagnoses, from well-known cancers to rare diseases. About 60 percent of U.S. adults have at least one chronic disease.
Many are invisible—Booth says he lives an otherwise normal life despite his Crohn’s—and they affect all ages. Some of those spring breakers in coronavirus denial may not be aware of how many of their classmates carry a greater risk of a severe case. They also may not realize just how difficult it can be for people with chronic illness to follow the most basic of health protocols. "I'm in bed all day long. It is physically hard for me to get up and stand at a sink and wait for the water to get fully hot, stand there for 2o seconds and wash my hands. I get really lightheaded. I get out of breath," says Hayward, who also suffers from a circulation condition called postural orthostatic tachycardia syndrome (POTS).
Conversely, everybody is now getting first-hand experience with the psychological challenges of homebound life. Hayward is aware of the self-quarantining parallels. “I'm not happy that everyone has to stay home now,” she messaged recently, “but I do really hope that maybe people's experience during this outbreak will bring greater compassion and empathy for those of us who endure social isolation as a regular part of our lives.”
According to Fine, it’s a common sentiment. “Folks in the chronic illness community are kind of like, ‘We’ve always been doing this. This is how we have to live every day.’”