Post by Nadica (She/Her) on Nov 4, 2024 0:56:50 GMT
Long COVID’s deep impact on Latinos - Published Jan 5, 2024
By Lygia Navarro and Johanna Bejarano
Editor’s note: This story first appeared on palabra, the digital news site by the National Association of Hispanic Journalists. It is part of a series produced in partnership between palabra and Northwest Public Broadcasting (NWPB) with the collaboration of reporters Lygia Navarro and Johanna Bejarano. *Some people interviewed for this article requested anonymity to discuss private health issues.
Victoria* is already exhausted, and her story hasn’t even begun. It’s late January 2021 in rural Sunnyside, Washington. The town of 16,000 people is a sleepy handful of blocks flecked with pickup trocas, churches on nearly every corner, and the twangs of Clint Black and Vicente Fernández. Geometric emerald chunks of farmland encircle the town.
Thirty-nine-year-old Victoria drags herself back and forth to her parents’ bedroom in a uniform of baggy burgundy sweatpants, scarf, knit hat and mask. Always a mask. As the eldest sibling, her unspoken job is to protect the family. But COVID-19 hits before they can get vaccinated.
When Victoria’s mamá got sick and quickly infected her papá, Victoria quarantined them. She shut them in their room, only cracking the door briefly to slide food in before retreating in a fog of Lysol.
Working in the health field, Victoria knows if they make it through the first 14 days without hospitalization, they will likely survive. Yet, caregiving drains her: Keeping track of fevers. Checking oxygen saturation. Making sure they’re drinking Pedialyte to stay hydrated. Worrying whether they will live or die.
Five days in, COVID comes for Victoria. Hard. Later, when she repeatedly scrutinizes these events, Victoria will wonder if it was the stress that caused it all — and changed her life forever.
At the pandemic’s onset, Victoria’s family’s work dynamics fit the standard in Sunnyside, where 86% of residents are Latino. “Keeping the members of your household safe — it was hard for a lot of families,” Victoria says. Living in multigenerational homes, many adult children, who’d grown up in the United States with access to education, had professional jobs, and switched to working from home. Their immigrant elders, who’d often only been able to finish fourth grade, braved the world to toil in fields, produce packing plants, supermarkets, or delivery trucks. As Leydy Rangel of the UFW Foundation puts it: “You can’t harvest food through Zoom.”
More than three decades ago, when 6-year-old Victoria’s family migrated from rural northern Mexico to this fertile slip of land cradling the zigzagging Yakima River, their futures promised only prosperity and opportunity.
According to oral histories of the Confederated Tribes and Bands of the Yakama Nation — who white colonizers forced out of the Yakima Valley in 1855 — the valley’s fecund lands have fed humans since time immemorial. Soon after the Yakamas’ removal to a nearby reservation, settler agriculture exploded.
By World War II, employers were frantic to hire contracted bracero laborers from Mexico — themselves descendants of Indigenous ancestors — to harvest the valley’s bounty of asparagus, pears, cherries and other cornucopia. This was how Victoria’s family arrived here: her abuelo and his brother had traveled back and forth to Washington as braceros decades before.
Victoria’s path took similar twists, in a 21st century, first-gen way. She moved all over the country for her education and jobs, then returned before the pandemic, bringing a newfound appreciation for the taste of apples freshly plucked from a tree that morning, and for the ambrosial scent of mint and grapes permeating the valley before harvest.
Today, agriculture is the largest industry fueling the Yakima Valley, the country’s twelfth-largest agriculture production area. Here, 77% of the nation’s hops (an essential ingredient in beer) and 70% of the nation’s apples are grown. Latinos, who constitute more than half of Yakima County’s population, power the agricultural industry.
While the area’s agricultural enterprises paid out $1.1 billion in wages in 2020, 59% of the low-wage agriculture jobs are held by undocumented folks and contracted foreign seasonal laborers doing work many Americans spurn. Latinos here live on median incomes that are less than half of white residents’, with 16% of Latinos living in poverty. Also in 2020: as they watched co-workers fall ill and die, Latino farmworkers repeatedly went on strike protesting employers’ refusals to provide paid sick leave, hazard pay and basic COVID protections like social distancing, gloves and masks.
“Every aspect of health care is lacking in the valley,” Yakima Herald-Republic health reporter Santiago Ochoa tells me.
In interview after interview, Yakima Valley residents and health care workers sketch in the details of a dire landscape:
The state’s busiest emergency room.
Abrupt shutdowns of hospital facilities.
Impoverished people without transportation or internet access for telehealth.
Eight-month waits for primary care appointments.
Nearly one in five Latinos uninsured.
More than half of residents receive Medicaid.
Resident physicians cycling in and out, never getting to know their patients.
Not enough specialists, resulting in day-long trips for specialized care in bigger cities.
With its Latino essential workforce risking their lives to feed their families — and the country — by summer 2020, COVID blazed through Yakima County, which quickly became Washington’s most scorching of hot spots. Not only did Yakima County tally the highest per-capita case rate of all West Coast counties (with Latinos making up 67% versus, 26% for white people), it also saw more cases than the entire state of Oregon. Ask Latinos here about 2020, and they shiver and avert their gazes, the trauma and death still too near.
Their positive tests marked just the beginning of terrifying new journeys as COVID slammed Victoria and many other Yakima Valley Latinos. Mix in scanty rural health care, systemic racism and a complicated emerging illness, and what do you get? Chaos: a population hardest hit by long COVID, but massively untreated, underdiagnosed, and undercounted by the government and medicine itself.
It won’t go away
The cough was the first clue something wasn’t right. When Victoria had COVID, she’d coughed a bit. But then, three months later, she started and couldn’t stop.
The Yakima Valley is so starved for physicians that it took five months to see a primary care doctor, who attributed Victoria’s incessant cough to allergies. Victoria tried every antihistamine and decongestant available; some brought relief for three, maybe four weeks, and then returned spasms of the dry, gasping bark. A few minutes apart, all day long. The worst was waking up coughing, at least hourly.
Victoria had chest x-rays. An ear, nose and throat specialist offered surgery on her nose’s deviated septum. As months passed, the black hair framing Victoria’s heart-shaped face started aging rapidly, until it was grayer than her mother’s.
Over a year after the cough began, an allergist prescribed allergy drops, and Victoria made a chilling discovery. Once the drops stopped the cough for a month, then two, Victoria realized that the extreme fatigue she’d thought was sleep deprivation from coughing all night persisted.
“The exhaustion comes from within your soul, it overpowers you,” she says. “It’s intolerable.”
And her mind was foggy. When interrupted at work every 10 minutes by a coughing jag, Victoria hadn’t realized COVID had substantially altered her brain. “There are things in my brain that I should have access to, like words, definitions, memories,” she says. “I know that they’re there but I can’t access them. It’s like a filing cabinet, but I can’t open it.”
Before long, the cough resurfaced. Sometime in 2021, reading COVID news for work, Victoria learned of long COVID: new or lingering health issues persisting at least three months after COVID infection.
How to get help if you think you might have long COVID
Talk to your doctor, and if your doctor doesn’t listen to your concerns, bring a loved one to advocate for you at your next appointment.
Bring this article (or other materials on long COVID) to show your doctor.
Ask your doctor about seeing specialists for long COVID symptoms, such as a cardiologist (for dysautonomia symptoms like dizziness, heart palpitations and shortness of breath), a gastroenterologist (for digestive problems), or a neurologist (for chronic nerve pain).
Ask to be referred to a long COVID clinic (if there is one in your area).
Now four years into the pandemic, there is still no treatment or cure for long COVID. COVID long-haulers (as they call themselves) have reported over 200 varied symptoms, with fatigue, dizziness, heart palpitations, post-exertion exhaustion, gastrointestinal issues, and brain dysfunction among the most common.
Long COVID is far from a mysterious illness, as it’s often called by the medical establishment and some media. There are precedents: for at least a century, historical documentation has shown that, while most recover, some people remain sick after viral or other illnesses. Yet funds for research have been severely limited, and sufferers ignored. Myalgic Encephalomyelitis – sometimes called Chronic Fatigue Syndrome, or ME/CFS — is a prime example. Like ME/CFS, long COVID afflicts many more women (and people assigned female at birth) than men, with women comprising as many as 80% of COVID long-haulers. Most long-haulers are in their 30s, 40s and 50s — the busiest years for women with children, who often put their own needs last.
What should have been instantly clear, given how disproportionately Black and Brown communities were hit by COVID, was that long COVID would wallop Americans of color. Yet, the U.S. government waited until June 2022 to begin tracking long COVID. Even now, with 18 months of data showing Latinos are the population most impacted by long COVID, palabra is among the very few media outlets to report this fact. Are the nation and the medical community willfully ignoring Latino long-haulers — after sending them into clouds of coronavirus to keep society’s privileged safe?
Fighting for a diagnosis
When Victoria mentioned long COVID, her doctor didn’t exactly ignore her: she listened, said “OK,” but never engaged on the topic. Same with Victoria’s allergist and the ear, nose and throat specialist. All they could do, the doctors said, was treat her symptoms.
“I’m highly educated and I know that you have to be your own advocate. But I kept asking, kept going on that line of thought, and they had nothing to say to me. Absolutely nothing,” she laments.
Victoria understood science on long COVID was limited, but still expected more. “All of the treatments we tried, it was as if COVID hadn’t existed. They should at least say that we need to investigate more, not continue acting like it wasn’t a factor. That was what was most frustrating.”
Just as Victoria fought to have her illness validated by doctors, 30 miles away in the northern Yakima Valley town of Moxee, 52-year-old María* waged a parallel battle. Both felt utterly alone.
When the pandemic began, María became the protector of her husband and children, all asthmatics. When she fell ill New Year’s Day 2021, she locked herself in her room, emerging weeks later to find her life unrecognizable.
Recounting her struggles, María reads deliberately from notes, holding back tears, then pushes her reading glasses atop her head. (María moved here from northern Mexico as an adult, and feels most comfortable in Spanish.) Her dyed brown hair, gold necklace and lightly made-up face project convivial warmth, but something intangible behind her expression belies a depth of grief María refuses to let escape. When I tell her I also have long COVID, and fell ill the exact same month, she breathes out some of her anxiety.
María’s long COVID includes chronic, full-body pain; memory lapses so severe she sometimes can’t remember if she’s eaten breakfast; such low energy that she’s constantly like a battery out of juice; unending shortness of breath; joint inflammation; and blood flow issues that leave her hands a deep purple. (The only time María ventured to the hospital, for her purple hands, she says staff attempted to clean them, thinking it was paint.) Like Victoria, María used to enjoy exercise and hiking in the valley’s foothills, but can do neither anymore.
María has no insurance, and receives care at the Yakima Valley Farm Workers Clinic, created in 1978 out of the farmworkers’ movement. The clinic’s multiple locations are the valley’s main providers of care irrespective of patients’ ability to pay.
Whereas Victoria’s doctors expressed indifference to the idea of COVID causing her health complaints, María’s doctors not only discounted this connection, but made serious errors of misdiagnosis.
“Every week I went to see my doctor. She got so stressed out (at not knowing what was wrong with me) that she stressed me out,” María says. “My doctor told me, ‘You know what? I think you have multiple sclerosis.’” María saw specialists, and afterwards, even without confirmation, María says her doctor still insisted she had MS. “I told her, ‘No. No, I don’t have multiple sclerosis. It’s COVID. This happened after COVID.’ I was really, really, really, really, really, really insistent on telling them that all of this was after COVID.”
Latinos uncovering the connections between their ill health and COVID is rare, partially due to the plummet in COVID coverage on Spanish-language news, says Monica Verduzco-Gutierrez, a long-hauler and head of the University of Texas Health Science Center San Antonio long COVID clinic. There has been no national public education on long COVID, in any language.
“It’s hard for people to understand what the real impact of long COVID is now and in the future,” says Lilián Bravo, Yakima Health District director of public health partnerships and the face of COVID updates on Yakima Valley television early in the pandemic. “We’re looking at a huge deficit in terms of people’s quality of life and ‘productivity.’”
Eventually, María’s doctor sent her to another specialist, who said that if she didn’t improve within a month, he’d operate on her hip. María’s never had hip problems. “He said, ‘Well, I don’t know what you’re going to do,’” and then put her on a strong steroid medication that made her vomit horribly, María says. She hasn’t tallied what she’s spent on medical bills, but after paying $1,548 for a single test, it must be many thousands of dollars.
Meanwhile, María’s family and friends kept insisting her maladies were psychological. “I never accepted that. I told them: ‘It’s not in my head. It’s in my body.’” It wasn’t until more than a year after becoming ill that María finally saw a rheumatologist who diagnosed her with long COVID and other immune dysfunctions. “I told her, ‘Yes, I knew that my body wasn’t working. I knew that something was wrong.’ I felt like I could relax. Finally someone is telling me that it’s not all in my head.” Once María was diagnosed, her extended family switched to asking how she was feeling and sympathizing with her.
Victoria, on the other hand, has never received a long COVID diagnosis. At Victoria’s request, her doctor referred her to the state’s only long COVID clinic, at the University of Washington in Seattle, but Victoria’s insurance, Kaiser Permanente, refused to pre-approve the visit — and the clinic wouldn’t accept cash from her. At present, the clinic isn’t even accepting patients from the Yakima Valley or any other part of Washington — they are only accepting patients in King County, which includes Seattle.
Victoria’s family hasn’t accepted her health struggles either. “I’d say, ‘I know that you think I’m crazy,’” Victoria says, chuckling, as she often does to lighten her discomfort. “My mom would fight with me: ‘You forgot to do this! Why are you so spacey?’ ‘Mami, it’s not that I forgot. In reality, I completely lost track of it.’” If Victoria is fatigued, her family asks how that’s possible after a full night’s sleep. “I’ve found that I have to defend myself. When I try to explain to people, they hear it as excuses from a lazy person — especially being Latinos.”
Karla Monterroso, a 42-year-old California Latina long-hauler since March 2020 who spent her first year bedbound, says, “(With long COVID), we have to rest in a way that, in our culture, is very difficult to achieve. We really judge exhaustion.” In fact, pushing physically or mentally for work can make long-haulers much sicker. Karla says Latino ethics of hard work like those of Victoria’s parents “aren’t the principles that are going to serve us with this illness.”
Long COVID diagnoses in Latinos are still too rare, due to untrained family medicine physicians and medical stereotypes, says Verduzco-Gutierrez. (Doctors might see blood sugar changes, for example, and assume that’s just because of Latinos’ high rates of diabetes, rather than long COVID.) She says “misinformation on long COVID” is rampant, with physicians claiming long COVID is a fad, or misdiagnosing the bone-deep exhaustion as depression. When Verduzco-Gutierrez’s own doctor invited her to speak to their practice, the assembled physicians weren’t aware of basic research, including that the drugs Paxlovid and Metformin can help prevent long COVID if taken at infection. In Washington, physicians must complete training on suicide, which takes 1,200 to 1,300 lives in the state yearly, but there’s no state-wide training on long COVID, which currently affects at least 498,290 Washingtonians.
Cultural skepticism about medicine — and entrenched stigmas about illness and disability — mean Sunnyside conversations about aftereffects don’t mention COVID itself. Victoria’s relatives push traditional herbal remedios, assuming that anyone still sick isn’t doing enough to recover. “(People suffering) feel like they’re complaining too much if they try to talk about it,” Victoria says. Meanwhile, her parents and others in her community avoid doctors out of stubbornness and mistrust, she says, “until they’re bleeding, when they’re super in pain…, when it’s gotten to the worst that they can handle.”
“People in this community use their bodies for work,” Victoria says. “If you’re Latino, you’re a hard worker. Period,” says Bravo. “What’s the opposite of that, if you’re not a hard worker? What are you? People don’t want to say, ‘I came to this country to work and all of a sudden I can’t anymore.’”
Victoria sees this with her parents, who’ve worked since the age of 10. Both have health issues inhibiting their lives since having COVID — her dad can’t take his daily hour-long walks anymore because of heart palpitations and shortness of breath, and her mom began getting headaches and saw her arthritis worsen dramatically — yet neither will admit they have long COVID. Nor will their friends and family. “If they noticed the patterns of what they themselves are saying and what their friends of the same age are suffering after COVID,” Victoria says of her community, “they’d hear that almost everyone is suffering some type of long COVID.”
Long COVID’s deep impact on Latinos
The “back to normal” ethos is most obvious in the absence of long COVID messaging while as many as 41 million adults now have — or have recovered from — long COVID nationwide. “The way that we’re talking about the pandemic is delegitimizing some of (long COVID’s) real impacts,” says Bravo of the Yakima Health District.
Even with limited demographic data, statistics show a nationwide reality similar to Victoria’s Sunnyside. Through a recurring survey, the Census Bureau estimates that 36% of Latinos nationally have had long COVID — likely a vast underestimate, given that the survey takes 20 minutes to complete online (Latinos have lower rates of broadband internet), and reaches only a sliver of the U.S. population. Experts like Verduzo-Gutierrez believe that true rates of long COVID in Latinos are higher than any reported statistic. California long-hauler Karla Monterroso agrees: “We are underdiagnosed by a severe amount. I do not believe the numbers.”
This fall, a UC Berkeley study reported that 62% of a group of infected California farmworkers developed long COVID. Weeks later, a survey from the University of Washington’s Latino Center for Health found that, of a sample group of 1,546 Washington Latinos, 41% of those infected became long-haulers. The Washington results may also be an undercount: many long-haulers wouldn’t have the energy or brain clarity to complete the 12-page survey, which was mailed to patients who’d seen their doctor within the prior six months. Meanwhile, many long-haulers stop seeing doctors after tiring of the effort and cost with no answers.
“Our community has not bounced back,” says Angie Hinojos, executive director of Centro Cultural Mexicano, which has distributed $29 million in rent assistance in Washington and hasn’t seen need wane. “That is going to affect our earning potential for generations.” The United Farm Workers’ philanthropic sister organization, the UFW Foundation, says union organizers hear about long COVID, and how it’s keeping people out of work, frequently.
Cultural and linguistic disconnects abound between doctors and Latinos on long COVID symptoms, some of which, like brain fog and fatigue, are nebulous. If doctors lack patient rapport — or don’t speak their language — they’ll miss what patients aren’t sharing about how long COVID changed their lives, work and relationships. That’s if Latinos actually go to the doctor.
“If you’re working in the orchards and your muscles are always sore, it’s just part of the day-to-day reality,” says Jesús Hernández, chief executive officer of Family Health Centers in north-central Washington. “If you’re constantly being exposed to dust and even chemicals in the work environment, it’s easy to just say, ‘Well, that’s just because of this or that,’ and not necessarily be readily willing to consider that this is something as unique as long COVID.”
Even Victoria says if not for the cough, she wouldn’t have sought medical advice for her fatigue. “There are a lot of people out there that are really tired, in a lot of pain and have no idea why. None,” says Karla, who was a nonprofit CEO when she became sick. “I have heard in the last three-and-a-half years the most racist and fatphobic things I have ever heard in my life. Like, ‘Oh, sometimes you got to lay off the beans and rice.’ I have a college education. I’m an executive. I am in the top 10% of wage earners in my community. If this is my experience, what is happening to the rest of my people?”
Conspiracy theories and misinformation
As Yakima Valley’s Latino vaccination rates continue dropping, I hear all the COVID conspiracy theories: the vaccine has a chip that’ll track you; the vaccine makes you and your children infertile; COVID tests are rigged to all be positive; that hospitals get paid more for COVID patients. Victoria laughs at the most absurd one she’s heard. Her mom’s explanation for her health problems nearly three years after COVID: the vaccine.
Across the Latino United States, social media algorithms and WhatsApp threads promoting COVID disinformation proliferate. Last summer, Latino Center for Health co-director Dr. Leo Morales did a long COVID community presentation just south of Yakima Valley. The audience’s first question: Are vaccines safe? “This is where we’re still at,” Morales says. “That’ll be a big stumbling block for people…in terms of getting to talking about long COVID.”
One morning in early November, Morales and his team gather in Toppenish at Heritage University, where 69% of students are Latino, to present their survey data. Neither presenters nor attendees wear masks, an essential tool for preventing COVID transmission and long COVID. “The only conversation that I’m having about COVID is in this room,” says María Sigüenza, executive director of the Washington State Commission on Hispanic Affairs.
Yakima Valley health institutions are also ignoring long COVID. Of the two main hospital systems, Astria Health declines interview requests and MultiCare reports that of 325,491 patients seen between January and November 2023, 112 — or 0.03% — were diagnosed with long COVID. The Yakima Valley Farmworkers Clinic, where María’s doctor works, refuses to let me speak to anyone about long COVID, despite providing patient information for the Latino Center for Health’s survey. Their doctors simply aren’t seeing long COVID, the clinic claims. Same with the other main community provider, Yakima Neighborhood Health Services, whose media officer responds to my interview requests with: “It’s not going to happen.”
“I think they’re not asking, they’re not looking,” Verduzco-Gutierrez says. “Do the doctors just…look at your diabetes or your blood pressure, but not ask you, ‘Did your diabetes get worse when you had COVID? Did your blood pressure get worse? Did you not have blood pressure problems before? And now do you get dizzy? Do you get headaches? Do you have pains?’” She believes that many, if not most, Latinos with long COVID aren’t getting care, whom she calls “the ones that we’re missing.”
An uncertain future
The outlook for Latinos with long COVID is grim. Cultural stigma and ableism cause now-disabled long-haulers to feel shame. (Ableism is societal prejudice and discrimination against disabled people.) Disability benefits are nearly impossible to get. Long-haulers are losing their homes, jobs and insurance. Latinos’ overrepresentation in sectors that don’t offer sick pay and are heavily physical — cleaning, service, agriculture, construction, manufacturing, homecare and healthcare among them — may automatically put them at higher long COVID risk, given ample anecdotal evidence that pushing through a COVID infection instead of resting can lead to long COVID. Latino care providers will become ill in greater numbers, imperiling the healthcare industry.
But Latinos may not be clear on these factors, says long-hauler Karla Monterroso. “My tío had said…'We must be defective because we get sick more than the white people.’ And I’m like ‘No, tío. We are exposed to the illness more. There’s nothing defective about our bodies.’ I’m afraid for us. It’s just going to be disability after disability after disability. We have to start in our small communities building caring infrastructure so that we can help each other. I am clear: No one is coming to save us. We’ve got to save us.”
Disability justice advocates worry about systems unable to cope with inevitable disabling waves of COVID in the future. “(Latinos) aren’t taking it as serious as they should,” says Mayra Colazo, executive director of Central Washington Disability Resources. “They’re not protecting each other. They’re not protecting themselves.” Karla sees the psychology behind this denial: “I have thought a lot about how much it takes to put yourself in danger every single day. (You have) to say ‘Oh, it’s fine. People are exaggerating,’ or you get that you’re in existential hell all of the time.”
Reinfection brings additional risk of long COVID, research shows, and Verduzco-Gutierrez says, “We still don’t know the impact of what is going to happen with all these reinfections. Is it going to cause more autoimmune disease? Is it going to be causing more dementia? Is it going to be causing more cancer?” She believes that every medical chart should include a COVID history, to guide doctors to look for the right clues.
“If we were to be lucky enough to capture everybody who has long COVID, we would overwhelm our (health) system and not be able to do anything for them,” Victoria says. “What’s the motivation for the medical field, for practitioners to find all those people?” For now, Victoria sees none. “And until that changes, I don’t think we will (properly count Latino long-haulers),” she adds.
Flashes of hope do exist. In September 2023, the federal government granted $5 million each to multiple long COVID clinics, including three with Latino-specific projects. In New York City, Mt. Sinai Hospital will soon open a new long COVID clinic near largely-Latino East Harlem, embedded in a primary care clinic with staff from the community to reach Latino long-haulers. Verduzco-Gutierrez’s San Antonio clinic will teach primary care providers across largely rural, Latino South Texas to conduct 15-minute low-tech long COVID examinations (the protocol for which is still being devised), and will deploy community tools to educate Latinos on long COVID.
Meanwhile, at the University of Washington long COVID clinic, staff are preparing a patient handbook, which will be adapted for Latinos and then translated into Spanish. They will also train primary care physicians to be local long COVID experts, and will return to treating patients from the whole state rather than just the county containing Seattle. After palabra’s inquiry, the UFW Foundation now has plans to survey United Farm Workers members to gauge long COVID pervasiveness, so the Foundation can lobby legislators and other decision makers to improve Latino long-hauler care.
Back at the Yakima Valley survey presentation, attendees brainstorm new care models: Adding long COVID screening to pediatric checkups, given that long COVID most impacts child-bearing-age women, so moms can bring information to their families and community. Using accessible language for long COVID messaging, or, as Heritage University nursing faculty member Genevieve Aguilar puts it: “How would I talk to my tía, how would I talk to my abuelita? If they can understand me, we’re good to go. If they can’t, olvídate. We have to reframe.”
More than anything, personal narratives will be the key to open people’s minds about long COVID — although that path may be challenging. In Los Angeles, Karla has dealt with a lack of full family and community support, in part, she believes, because her body represents COVID. “I am living, breathing proof of a pandemic no one wants to admit is still happening, and that there is no cure for what I have. That is a really scary possibility.”
While Karla does identify as disabled, Victoria and María don’t. Victoria has learned to live and move within her physical limits. At work, she sometimes feels inhibited by her cognitive issues. “I tell my boss all the time, ‘Oh man, you guys hired such a smart person. But what you got was after COVID, so it’s not the same.’” At times, she worries about the trajectory of her career, about how her work’s intense problem-solving wears out her brain. Will she be able to pursue larger challenges in work in the future? Or will long COVID ultimately make her fail?
Victoria tells me she “remains hopeful that there is a solution.” In a surprising twist, her cough completely disappeared eight months ago — when she became pregnant. (Other long-haulers have seen their symptoms improve with pregnancy, as well, likely due to immune system changes allowing a pregnant person’s body to not reject their baby’s growing cells). Victoria is optimistic that her other symptoms might disappear after she gives birth. And that, maybe someday, her parents will admit they have long COVID, too.
By Lygia Navarro and Johanna Bejarano
Editor’s note: This story first appeared on palabra, the digital news site by the National Association of Hispanic Journalists. It is part of a series produced in partnership between palabra and Northwest Public Broadcasting (NWPB) with the collaboration of reporters Lygia Navarro and Johanna Bejarano. *Some people interviewed for this article requested anonymity to discuss private health issues.
Victoria* is already exhausted, and her story hasn’t even begun. It’s late January 2021 in rural Sunnyside, Washington. The town of 16,000 people is a sleepy handful of blocks flecked with pickup trocas, churches on nearly every corner, and the twangs of Clint Black and Vicente Fernández. Geometric emerald chunks of farmland encircle the town.
Thirty-nine-year-old Victoria drags herself back and forth to her parents’ bedroom in a uniform of baggy burgundy sweatpants, scarf, knit hat and mask. Always a mask. As the eldest sibling, her unspoken job is to protect the family. But COVID-19 hits before they can get vaccinated.
When Victoria’s mamá got sick and quickly infected her papá, Victoria quarantined them. She shut them in their room, only cracking the door briefly to slide food in before retreating in a fog of Lysol.
Working in the health field, Victoria knows if they make it through the first 14 days without hospitalization, they will likely survive. Yet, caregiving drains her: Keeping track of fevers. Checking oxygen saturation. Making sure they’re drinking Pedialyte to stay hydrated. Worrying whether they will live or die.
Five days in, COVID comes for Victoria. Hard. Later, when she repeatedly scrutinizes these events, Victoria will wonder if it was the stress that caused it all — and changed her life forever.
At the pandemic’s onset, Victoria’s family’s work dynamics fit the standard in Sunnyside, where 86% of residents are Latino. “Keeping the members of your household safe — it was hard for a lot of families,” Victoria says. Living in multigenerational homes, many adult children, who’d grown up in the United States with access to education, had professional jobs, and switched to working from home. Their immigrant elders, who’d often only been able to finish fourth grade, braved the world to toil in fields, produce packing plants, supermarkets, or delivery trucks. As Leydy Rangel of the UFW Foundation puts it: “You can’t harvest food through Zoom.”
More than three decades ago, when 6-year-old Victoria’s family migrated from rural northern Mexico to this fertile slip of land cradling the zigzagging Yakima River, their futures promised only prosperity and opportunity.
According to oral histories of the Confederated Tribes and Bands of the Yakama Nation — who white colonizers forced out of the Yakima Valley in 1855 — the valley’s fecund lands have fed humans since time immemorial. Soon after the Yakamas’ removal to a nearby reservation, settler agriculture exploded.
By World War II, employers were frantic to hire contracted bracero laborers from Mexico — themselves descendants of Indigenous ancestors — to harvest the valley’s bounty of asparagus, pears, cherries and other cornucopia. This was how Victoria’s family arrived here: her abuelo and his brother had traveled back and forth to Washington as braceros decades before.
Victoria’s path took similar twists, in a 21st century, first-gen way. She moved all over the country for her education and jobs, then returned before the pandemic, bringing a newfound appreciation for the taste of apples freshly plucked from a tree that morning, and for the ambrosial scent of mint and grapes permeating the valley before harvest.
Today, agriculture is the largest industry fueling the Yakima Valley, the country’s twelfth-largest agriculture production area. Here, 77% of the nation’s hops (an essential ingredient in beer) and 70% of the nation’s apples are grown. Latinos, who constitute more than half of Yakima County’s population, power the agricultural industry.
While the area’s agricultural enterprises paid out $1.1 billion in wages in 2020, 59% of the low-wage agriculture jobs are held by undocumented folks and contracted foreign seasonal laborers doing work many Americans spurn. Latinos here live on median incomes that are less than half of white residents’, with 16% of Latinos living in poverty. Also in 2020: as they watched co-workers fall ill and die, Latino farmworkers repeatedly went on strike protesting employers’ refusals to provide paid sick leave, hazard pay and basic COVID protections like social distancing, gloves and masks.
“Every aspect of health care is lacking in the valley,” Yakima Herald-Republic health reporter Santiago Ochoa tells me.
In interview after interview, Yakima Valley residents and health care workers sketch in the details of a dire landscape:
The state’s busiest emergency room.
Abrupt shutdowns of hospital facilities.
Impoverished people without transportation or internet access for telehealth.
Eight-month waits for primary care appointments.
Nearly one in five Latinos uninsured.
More than half of residents receive Medicaid.
Resident physicians cycling in and out, never getting to know their patients.
Not enough specialists, resulting in day-long trips for specialized care in bigger cities.
With its Latino essential workforce risking their lives to feed their families — and the country — by summer 2020, COVID blazed through Yakima County, which quickly became Washington’s most scorching of hot spots. Not only did Yakima County tally the highest per-capita case rate of all West Coast counties (with Latinos making up 67% versus, 26% for white people), it also saw more cases than the entire state of Oregon. Ask Latinos here about 2020, and they shiver and avert their gazes, the trauma and death still too near.
Their positive tests marked just the beginning of terrifying new journeys as COVID slammed Victoria and many other Yakima Valley Latinos. Mix in scanty rural health care, systemic racism and a complicated emerging illness, and what do you get? Chaos: a population hardest hit by long COVID, but massively untreated, underdiagnosed, and undercounted by the government and medicine itself.
It won’t go away
The cough was the first clue something wasn’t right. When Victoria had COVID, she’d coughed a bit. But then, three months later, she started and couldn’t stop.
The Yakima Valley is so starved for physicians that it took five months to see a primary care doctor, who attributed Victoria’s incessant cough to allergies. Victoria tried every antihistamine and decongestant available; some brought relief for three, maybe four weeks, and then returned spasms of the dry, gasping bark. A few minutes apart, all day long. The worst was waking up coughing, at least hourly.
Victoria had chest x-rays. An ear, nose and throat specialist offered surgery on her nose’s deviated septum. As months passed, the black hair framing Victoria’s heart-shaped face started aging rapidly, until it was grayer than her mother’s.
Over a year after the cough began, an allergist prescribed allergy drops, and Victoria made a chilling discovery. Once the drops stopped the cough for a month, then two, Victoria realized that the extreme fatigue she’d thought was sleep deprivation from coughing all night persisted.
“The exhaustion comes from within your soul, it overpowers you,” she says. “It’s intolerable.”
And her mind was foggy. When interrupted at work every 10 minutes by a coughing jag, Victoria hadn’t realized COVID had substantially altered her brain. “There are things in my brain that I should have access to, like words, definitions, memories,” she says. “I know that they’re there but I can’t access them. It’s like a filing cabinet, but I can’t open it.”
Before long, the cough resurfaced. Sometime in 2021, reading COVID news for work, Victoria learned of long COVID: new or lingering health issues persisting at least three months after COVID infection.
How to get help if you think you might have long COVID
Talk to your doctor, and if your doctor doesn’t listen to your concerns, bring a loved one to advocate for you at your next appointment.
Bring this article (or other materials on long COVID) to show your doctor.
Ask your doctor about seeing specialists for long COVID symptoms, such as a cardiologist (for dysautonomia symptoms like dizziness, heart palpitations and shortness of breath), a gastroenterologist (for digestive problems), or a neurologist (for chronic nerve pain).
Ask to be referred to a long COVID clinic (if there is one in your area).
Now four years into the pandemic, there is still no treatment or cure for long COVID. COVID long-haulers (as they call themselves) have reported over 200 varied symptoms, with fatigue, dizziness, heart palpitations, post-exertion exhaustion, gastrointestinal issues, and brain dysfunction among the most common.
Long COVID is far from a mysterious illness, as it’s often called by the medical establishment and some media. There are precedents: for at least a century, historical documentation has shown that, while most recover, some people remain sick after viral or other illnesses. Yet funds for research have been severely limited, and sufferers ignored. Myalgic Encephalomyelitis – sometimes called Chronic Fatigue Syndrome, or ME/CFS — is a prime example. Like ME/CFS, long COVID afflicts many more women (and people assigned female at birth) than men, with women comprising as many as 80% of COVID long-haulers. Most long-haulers are in their 30s, 40s and 50s — the busiest years for women with children, who often put their own needs last.
What should have been instantly clear, given how disproportionately Black and Brown communities were hit by COVID, was that long COVID would wallop Americans of color. Yet, the U.S. government waited until June 2022 to begin tracking long COVID. Even now, with 18 months of data showing Latinos are the population most impacted by long COVID, palabra is among the very few media outlets to report this fact. Are the nation and the medical community willfully ignoring Latino long-haulers — after sending them into clouds of coronavirus to keep society’s privileged safe?
Fighting for a diagnosis
When Victoria mentioned long COVID, her doctor didn’t exactly ignore her: she listened, said “OK,” but never engaged on the topic. Same with Victoria’s allergist and the ear, nose and throat specialist. All they could do, the doctors said, was treat her symptoms.
“I’m highly educated and I know that you have to be your own advocate. But I kept asking, kept going on that line of thought, and they had nothing to say to me. Absolutely nothing,” she laments.
Victoria understood science on long COVID was limited, but still expected more. “All of the treatments we tried, it was as if COVID hadn’t existed. They should at least say that we need to investigate more, not continue acting like it wasn’t a factor. That was what was most frustrating.”
Just as Victoria fought to have her illness validated by doctors, 30 miles away in the northern Yakima Valley town of Moxee, 52-year-old María* waged a parallel battle. Both felt utterly alone.
When the pandemic began, María became the protector of her husband and children, all asthmatics. When she fell ill New Year’s Day 2021, she locked herself in her room, emerging weeks later to find her life unrecognizable.
Recounting her struggles, María reads deliberately from notes, holding back tears, then pushes her reading glasses atop her head. (María moved here from northern Mexico as an adult, and feels most comfortable in Spanish.) Her dyed brown hair, gold necklace and lightly made-up face project convivial warmth, but something intangible behind her expression belies a depth of grief María refuses to let escape. When I tell her I also have long COVID, and fell ill the exact same month, she breathes out some of her anxiety.
María’s long COVID includes chronic, full-body pain; memory lapses so severe she sometimes can’t remember if she’s eaten breakfast; such low energy that she’s constantly like a battery out of juice; unending shortness of breath; joint inflammation; and blood flow issues that leave her hands a deep purple. (The only time María ventured to the hospital, for her purple hands, she says staff attempted to clean them, thinking it was paint.) Like Victoria, María used to enjoy exercise and hiking in the valley’s foothills, but can do neither anymore.
María has no insurance, and receives care at the Yakima Valley Farm Workers Clinic, created in 1978 out of the farmworkers’ movement. The clinic’s multiple locations are the valley’s main providers of care irrespective of patients’ ability to pay.
Whereas Victoria’s doctors expressed indifference to the idea of COVID causing her health complaints, María’s doctors not only discounted this connection, but made serious errors of misdiagnosis.
“Every week I went to see my doctor. She got so stressed out (at not knowing what was wrong with me) that she stressed me out,” María says. “My doctor told me, ‘You know what? I think you have multiple sclerosis.’” María saw specialists, and afterwards, even without confirmation, María says her doctor still insisted she had MS. “I told her, ‘No. No, I don’t have multiple sclerosis. It’s COVID. This happened after COVID.’ I was really, really, really, really, really, really insistent on telling them that all of this was after COVID.”
Latinos uncovering the connections between their ill health and COVID is rare, partially due to the plummet in COVID coverage on Spanish-language news, says Monica Verduzco-Gutierrez, a long-hauler and head of the University of Texas Health Science Center San Antonio long COVID clinic. There has been no national public education on long COVID, in any language.
“It’s hard for people to understand what the real impact of long COVID is now and in the future,” says Lilián Bravo, Yakima Health District director of public health partnerships and the face of COVID updates on Yakima Valley television early in the pandemic. “We’re looking at a huge deficit in terms of people’s quality of life and ‘productivity.’”
Eventually, María’s doctor sent her to another specialist, who said that if she didn’t improve within a month, he’d operate on her hip. María’s never had hip problems. “He said, ‘Well, I don’t know what you’re going to do,’” and then put her on a strong steroid medication that made her vomit horribly, María says. She hasn’t tallied what she’s spent on medical bills, but after paying $1,548 for a single test, it must be many thousands of dollars.
Meanwhile, María’s family and friends kept insisting her maladies were psychological. “I never accepted that. I told them: ‘It’s not in my head. It’s in my body.’” It wasn’t until more than a year after becoming ill that María finally saw a rheumatologist who diagnosed her with long COVID and other immune dysfunctions. “I told her, ‘Yes, I knew that my body wasn’t working. I knew that something was wrong.’ I felt like I could relax. Finally someone is telling me that it’s not all in my head.” Once María was diagnosed, her extended family switched to asking how she was feeling and sympathizing with her.
Victoria, on the other hand, has never received a long COVID diagnosis. At Victoria’s request, her doctor referred her to the state’s only long COVID clinic, at the University of Washington in Seattle, but Victoria’s insurance, Kaiser Permanente, refused to pre-approve the visit — and the clinic wouldn’t accept cash from her. At present, the clinic isn’t even accepting patients from the Yakima Valley or any other part of Washington — they are only accepting patients in King County, which includes Seattle.
Victoria’s family hasn’t accepted her health struggles either. “I’d say, ‘I know that you think I’m crazy,’” Victoria says, chuckling, as she often does to lighten her discomfort. “My mom would fight with me: ‘You forgot to do this! Why are you so spacey?’ ‘Mami, it’s not that I forgot. In reality, I completely lost track of it.’” If Victoria is fatigued, her family asks how that’s possible after a full night’s sleep. “I’ve found that I have to defend myself. When I try to explain to people, they hear it as excuses from a lazy person — especially being Latinos.”
Karla Monterroso, a 42-year-old California Latina long-hauler since March 2020 who spent her first year bedbound, says, “(With long COVID), we have to rest in a way that, in our culture, is very difficult to achieve. We really judge exhaustion.” In fact, pushing physically or mentally for work can make long-haulers much sicker. Karla says Latino ethics of hard work like those of Victoria’s parents “aren’t the principles that are going to serve us with this illness.”
Long COVID diagnoses in Latinos are still too rare, due to untrained family medicine physicians and medical stereotypes, says Verduzco-Gutierrez. (Doctors might see blood sugar changes, for example, and assume that’s just because of Latinos’ high rates of diabetes, rather than long COVID.) She says “misinformation on long COVID” is rampant, with physicians claiming long COVID is a fad, or misdiagnosing the bone-deep exhaustion as depression. When Verduzco-Gutierrez’s own doctor invited her to speak to their practice, the assembled physicians weren’t aware of basic research, including that the drugs Paxlovid and Metformin can help prevent long COVID if taken at infection. In Washington, physicians must complete training on suicide, which takes 1,200 to 1,300 lives in the state yearly, but there’s no state-wide training on long COVID, which currently affects at least 498,290 Washingtonians.
Cultural skepticism about medicine — and entrenched stigmas about illness and disability — mean Sunnyside conversations about aftereffects don’t mention COVID itself. Victoria’s relatives push traditional herbal remedios, assuming that anyone still sick isn’t doing enough to recover. “(People suffering) feel like they’re complaining too much if they try to talk about it,” Victoria says. Meanwhile, her parents and others in her community avoid doctors out of stubbornness and mistrust, she says, “until they’re bleeding, when they’re super in pain…, when it’s gotten to the worst that they can handle.”
“People in this community use their bodies for work,” Victoria says. “If you’re Latino, you’re a hard worker. Period,” says Bravo. “What’s the opposite of that, if you’re not a hard worker? What are you? People don’t want to say, ‘I came to this country to work and all of a sudden I can’t anymore.’”
Victoria sees this with her parents, who’ve worked since the age of 10. Both have health issues inhibiting their lives since having COVID — her dad can’t take his daily hour-long walks anymore because of heart palpitations and shortness of breath, and her mom began getting headaches and saw her arthritis worsen dramatically — yet neither will admit they have long COVID. Nor will their friends and family. “If they noticed the patterns of what they themselves are saying and what their friends of the same age are suffering after COVID,” Victoria says of her community, “they’d hear that almost everyone is suffering some type of long COVID.”
Long COVID’s deep impact on Latinos
The “back to normal” ethos is most obvious in the absence of long COVID messaging while as many as 41 million adults now have — or have recovered from — long COVID nationwide. “The way that we’re talking about the pandemic is delegitimizing some of (long COVID’s) real impacts,” says Bravo of the Yakima Health District.
Even with limited demographic data, statistics show a nationwide reality similar to Victoria’s Sunnyside. Through a recurring survey, the Census Bureau estimates that 36% of Latinos nationally have had long COVID — likely a vast underestimate, given that the survey takes 20 minutes to complete online (Latinos have lower rates of broadband internet), and reaches only a sliver of the U.S. population. Experts like Verduzo-Gutierrez believe that true rates of long COVID in Latinos are higher than any reported statistic. California long-hauler Karla Monterroso agrees: “We are underdiagnosed by a severe amount. I do not believe the numbers.”
This fall, a UC Berkeley study reported that 62% of a group of infected California farmworkers developed long COVID. Weeks later, a survey from the University of Washington’s Latino Center for Health found that, of a sample group of 1,546 Washington Latinos, 41% of those infected became long-haulers. The Washington results may also be an undercount: many long-haulers wouldn’t have the energy or brain clarity to complete the 12-page survey, which was mailed to patients who’d seen their doctor within the prior six months. Meanwhile, many long-haulers stop seeing doctors after tiring of the effort and cost with no answers.
“Our community has not bounced back,” says Angie Hinojos, executive director of Centro Cultural Mexicano, which has distributed $29 million in rent assistance in Washington and hasn’t seen need wane. “That is going to affect our earning potential for generations.” The United Farm Workers’ philanthropic sister organization, the UFW Foundation, says union organizers hear about long COVID, and how it’s keeping people out of work, frequently.
Cultural and linguistic disconnects abound between doctors and Latinos on long COVID symptoms, some of which, like brain fog and fatigue, are nebulous. If doctors lack patient rapport — or don’t speak their language — they’ll miss what patients aren’t sharing about how long COVID changed their lives, work and relationships. That’s if Latinos actually go to the doctor.
“If you’re working in the orchards and your muscles are always sore, it’s just part of the day-to-day reality,” says Jesús Hernández, chief executive officer of Family Health Centers in north-central Washington. “If you’re constantly being exposed to dust and even chemicals in the work environment, it’s easy to just say, ‘Well, that’s just because of this or that,’ and not necessarily be readily willing to consider that this is something as unique as long COVID.”
Even Victoria says if not for the cough, she wouldn’t have sought medical advice for her fatigue. “There are a lot of people out there that are really tired, in a lot of pain and have no idea why. None,” says Karla, who was a nonprofit CEO when she became sick. “I have heard in the last three-and-a-half years the most racist and fatphobic things I have ever heard in my life. Like, ‘Oh, sometimes you got to lay off the beans and rice.’ I have a college education. I’m an executive. I am in the top 10% of wage earners in my community. If this is my experience, what is happening to the rest of my people?”
Conspiracy theories and misinformation
As Yakima Valley’s Latino vaccination rates continue dropping, I hear all the COVID conspiracy theories: the vaccine has a chip that’ll track you; the vaccine makes you and your children infertile; COVID tests are rigged to all be positive; that hospitals get paid more for COVID patients. Victoria laughs at the most absurd one she’s heard. Her mom’s explanation for her health problems nearly three years after COVID: the vaccine.
Across the Latino United States, social media algorithms and WhatsApp threads promoting COVID disinformation proliferate. Last summer, Latino Center for Health co-director Dr. Leo Morales did a long COVID community presentation just south of Yakima Valley. The audience’s first question: Are vaccines safe? “This is where we’re still at,” Morales says. “That’ll be a big stumbling block for people…in terms of getting to talking about long COVID.”
One morning in early November, Morales and his team gather in Toppenish at Heritage University, where 69% of students are Latino, to present their survey data. Neither presenters nor attendees wear masks, an essential tool for preventing COVID transmission and long COVID. “The only conversation that I’m having about COVID is in this room,” says María Sigüenza, executive director of the Washington State Commission on Hispanic Affairs.
Yakima Valley health institutions are also ignoring long COVID. Of the two main hospital systems, Astria Health declines interview requests and MultiCare reports that of 325,491 patients seen between January and November 2023, 112 — or 0.03% — were diagnosed with long COVID. The Yakima Valley Farmworkers Clinic, where María’s doctor works, refuses to let me speak to anyone about long COVID, despite providing patient information for the Latino Center for Health’s survey. Their doctors simply aren’t seeing long COVID, the clinic claims. Same with the other main community provider, Yakima Neighborhood Health Services, whose media officer responds to my interview requests with: “It’s not going to happen.”
“I think they’re not asking, they’re not looking,” Verduzco-Gutierrez says. “Do the doctors just…look at your diabetes or your blood pressure, but not ask you, ‘Did your diabetes get worse when you had COVID? Did your blood pressure get worse? Did you not have blood pressure problems before? And now do you get dizzy? Do you get headaches? Do you have pains?’” She believes that many, if not most, Latinos with long COVID aren’t getting care, whom she calls “the ones that we’re missing.”
An uncertain future
The outlook for Latinos with long COVID is grim. Cultural stigma and ableism cause now-disabled long-haulers to feel shame. (Ableism is societal prejudice and discrimination against disabled people.) Disability benefits are nearly impossible to get. Long-haulers are losing their homes, jobs and insurance. Latinos’ overrepresentation in sectors that don’t offer sick pay and are heavily physical — cleaning, service, agriculture, construction, manufacturing, homecare and healthcare among them — may automatically put them at higher long COVID risk, given ample anecdotal evidence that pushing through a COVID infection instead of resting can lead to long COVID. Latino care providers will become ill in greater numbers, imperiling the healthcare industry.
But Latinos may not be clear on these factors, says long-hauler Karla Monterroso. “My tío had said…'We must be defective because we get sick more than the white people.’ And I’m like ‘No, tío. We are exposed to the illness more. There’s nothing defective about our bodies.’ I’m afraid for us. It’s just going to be disability after disability after disability. We have to start in our small communities building caring infrastructure so that we can help each other. I am clear: No one is coming to save us. We’ve got to save us.”
Disability justice advocates worry about systems unable to cope with inevitable disabling waves of COVID in the future. “(Latinos) aren’t taking it as serious as they should,” says Mayra Colazo, executive director of Central Washington Disability Resources. “They’re not protecting each other. They’re not protecting themselves.” Karla sees the psychology behind this denial: “I have thought a lot about how much it takes to put yourself in danger every single day. (You have) to say ‘Oh, it’s fine. People are exaggerating,’ or you get that you’re in existential hell all of the time.”
Reinfection brings additional risk of long COVID, research shows, and Verduzco-Gutierrez says, “We still don’t know the impact of what is going to happen with all these reinfections. Is it going to cause more autoimmune disease? Is it going to be causing more dementia? Is it going to be causing more cancer?” She believes that every medical chart should include a COVID history, to guide doctors to look for the right clues.
“If we were to be lucky enough to capture everybody who has long COVID, we would overwhelm our (health) system and not be able to do anything for them,” Victoria says. “What’s the motivation for the medical field, for practitioners to find all those people?” For now, Victoria sees none. “And until that changes, I don’t think we will (properly count Latino long-haulers),” she adds.
Flashes of hope do exist. In September 2023, the federal government granted $5 million each to multiple long COVID clinics, including three with Latino-specific projects. In New York City, Mt. Sinai Hospital will soon open a new long COVID clinic near largely-Latino East Harlem, embedded in a primary care clinic with staff from the community to reach Latino long-haulers. Verduzco-Gutierrez’s San Antonio clinic will teach primary care providers across largely rural, Latino South Texas to conduct 15-minute low-tech long COVID examinations (the protocol for which is still being devised), and will deploy community tools to educate Latinos on long COVID.
Meanwhile, at the University of Washington long COVID clinic, staff are preparing a patient handbook, which will be adapted for Latinos and then translated into Spanish. They will also train primary care physicians to be local long COVID experts, and will return to treating patients from the whole state rather than just the county containing Seattle. After palabra’s inquiry, the UFW Foundation now has plans to survey United Farm Workers members to gauge long COVID pervasiveness, so the Foundation can lobby legislators and other decision makers to improve Latino long-hauler care.
Back at the Yakima Valley survey presentation, attendees brainstorm new care models: Adding long COVID screening to pediatric checkups, given that long COVID most impacts child-bearing-age women, so moms can bring information to their families and community. Using accessible language for long COVID messaging, or, as Heritage University nursing faculty member Genevieve Aguilar puts it: “How would I talk to my tía, how would I talk to my abuelita? If they can understand me, we’re good to go. If they can’t, olvídate. We have to reframe.”
More than anything, personal narratives will be the key to open people’s minds about long COVID — although that path may be challenging. In Los Angeles, Karla has dealt with a lack of full family and community support, in part, she believes, because her body represents COVID. “I am living, breathing proof of a pandemic no one wants to admit is still happening, and that there is no cure for what I have. That is a really scary possibility.”
While Karla does identify as disabled, Victoria and María don’t. Victoria has learned to live and move within her physical limits. At work, she sometimes feels inhibited by her cognitive issues. “I tell my boss all the time, ‘Oh man, you guys hired such a smart person. But what you got was after COVID, so it’s not the same.’” At times, she worries about the trajectory of her career, about how her work’s intense problem-solving wears out her brain. Will she be able to pursue larger challenges in work in the future? Or will long COVID ultimately make her fail?
Victoria tells me she “remains hopeful that there is a solution.” In a surprising twist, her cough completely disappeared eight months ago — when she became pregnant. (Other long-haulers have seen their symptoms improve with pregnancy, as well, likely due to immune system changes allowing a pregnant person’s body to not reject their baby’s growing cells). Victoria is optimistic that her other symptoms might disappear after she gives birth. And that, maybe someday, her parents will admit they have long COVID, too.