To mark six months since a pandemic was officially declared, BuzzFeed News is publishing The Lost Year series: six stories of six people from six different age groups across the US. Each day this week, we are profiling a new person to see what toll the coronavirus has taken on their lives. In this fourth installment, we meet a millennial woman in New Orleans.
Carrie Stuckwisch thinks about that Friday night often. She was still in her work chinos, full from a nice dinner, and cozy on the couch between friends, warm from her red wine. It was March 14, the last day she felt free, before the coronavirus attacked her country and then her own body, clicking into her cells like a key and locking down her lungs, heart, brain, and nervous system.
Before March, she was a personal chef in New Orleans who worked a little too much but still squeezed in brunches, church, roommate dinners, dates, and several spin classes every week. She’d been making progress checking off the standard life boxes: going to school to pursue her passion? Check. Turning a job into a career with health benefits? Check. Buying a car? Check. Significantly reducing her debt? Saving up enough money to travel? Putting herself back on dating apps after a painful breakup? Check. Check. Check.
And while her life was far from where she’d imagined it would be by this age (she was still living with a roommate and rebounding from graduating culinary school in 2006), it was solidifying into something she was proud of. She finally felt secure, sure of herself and her ability to fully grasp a stable future that, for millions of millennials, sometimes feels elusive.
Now, she can barely function. Walking down the block leaves her winded, and buying groceries requires immediate rest. Because of that, she lost her job — her dream job that helped validate all those student loans. She had to give up her apartment, accept financial help from her dad, and replace dates with doctors’ appointments. She’s 35, and suddenly she’s starting from scratch.
“My life looks nothing like it used to. I hardly recognize it.”
Six months after getting sick, she’s still unemployed. Her days are filled with liver and kidney pain, body aches, a racing heart, and extreme fatigue. At night, she can’t sleep, no matter how exhausted she is. She can never fully catch her breath, and her brain feels constantly shrouded in a heavy fog that makes it hard to focus, carry conversations, read, or even look at her phone.
On top of losing her social life and summer plans, she lost something she never expected: her sense of self, her innate ability to move through and operate in the world, and it had a devastating domino effect. Adjusting to living with a potentially chronic illness in America was not a cost she had factored into her budget at 35.
“I think about being healthy and all the things I used to do without thinking, like wake up, throw on a pair of jeans, rush around, make coffee, and run out the door,” she said. “My life looks nothing like it used to. I hardly recognize it.”
Carrie is what is known as a COVID-19 “long-hauler,” part of a growing group of people across the globe who got sick with the virus but never received a positive test result and, months later, still have ongoing, debilitating symptoms that have left doctors dumbfounded, dubious, or outright dismissive. Like Carrie, hundreds of thousands of patients were young, active, and had no real health problems. Their cases seem to shatter the belief that the virus mostly affects elderly or vulnerable people.
While each long-hauler’s case is unique, most experience a similar set of symptoms: extreme weakness and fatigue, difficulty breathing, a constant racing heart, severe brain fog, and memory loss. They’ve been clamoring for help and recognition. It wasn’t until July that the CDC acknowledged COVID-19 can result in prolonged illness “even among young adults without underlying chronic medical conditions.” Still, there has not been any concerted effort to recognize and treat this largely uncounted population, leaving them to fend for themselves and navigate a healthcare system and a society that is woefully unprepared to handle them.
“There is a whole other group in the middle. We are in limbo, in hell,” Carrie said. “Doctors don't believe us, and scientists haven't figured it out what it's doing to our body either.”
And because of their country’s slow and fractured response to the pandemic, long-haulers continue to experience dreadful symptoms. Because their cases were more “mild” in the beginning, meaning they weren’t hospitalized, Carrie and scores of others never tested positive for the virus (if they could get a test at all), and antibodies still aren’t showing up in their blood. As a result, they’ve been gaslighted, blocked from benefits, penalized for not returning to work, and have been unable to get specialized treatment. Given the virus’s steady spread — the US now has more than 6 million cases — doctors studying long-haulers say if we don’t do something, if we don’t erect clinics and launch programs, millions of people could be sick or have a disability for the rest of their lives.
“Our system as a whole leaves a lot of people behind,” Carrie said. “And if you don’t work hard to follow up or have the ability to make calls and demand appointments, you’re screwed.”
Around 2 p.m., her brain usually starts to flicker, like someone tripped on a plug, short-circuiting the connection. It’s a Monday, and her computer screen is filled with bank statements, a payment plan for her medical bills, unemployment benefit filings, and a Slack support group for long-haulers. Reading other people’s victory stories gives her “a boost” before she checks her inbox, like the millions of other newly unemployed people, for any news on the 20 job applications she’s filled out. She submitted one to Whole Foods, again, and a few others for which she doesn’t think she’s qualified.
“I haven’t heard back from any jobs, and it’s been terrifying,” she said. “I know I am smart and can adapt, but everyone else wants these jobs. Even if I wanted an entry-level administrative job, I don’t think they’d take me seriously.”
Like many thirtysomethings who went to school for creativity and passion only to graduate during a recession, pushing through has become instinctual for Carrie, an ingrained survival gear. She might be mellow, but she grinds. As her best friend, Robyn Dorch, puts it, “Carrie works her ass off.”
“We used to run half-marathons together. She’s not a person who would get winded walking around Old Navy and need to sit down,” Dorch said. “It’s like someone dimmed her down. The overwhelming word I feel describes Carrie is ‘tired.’”
“It feels like rolling a boulder up a hill. It feels completely unfair.”
Carrie’s only been at these menial daily tasks for two hours, but that’s usually about all she can do. It’s one thing to lose your job because of the coronavirus, but to also lose your health and your ability to function in the world…she pauses, trying to describe it: “It feels like rolling a boulder up a hill. It feels completely unfair.”
Around 2 p.m. on a typical Monday last year, Carrie would be halfway through her 10-hour day as a personal chef. She would’ve already been to several stores, unloaded groceries, meal-prepped, and cooked dinner for a family who had felt like her own. The job was what she had hoped for back when she took out loans for culinary school and slogged long hours in restaurants. She worked there for six years — until the coronavirus hit and she lost her job. “It was devastating,” Carrie said.
She is far from alone. Across the country, the coronavirus has practically eviscerated the food and hospitality industry, and the comeback has been tough. In March and April, 7.7 million people working in restaurants, bars, hotels, and leisure spaces across the country lost their jobs. Things were looking up in June, but then cases surged and a new round of state-imposed restrictions brought a devastating whiplash.
Women like Carrie have been hit especially hard. In June, 11.2% of women over the age of 20 were unemployed, outpacing men by a full percentage point. That’s because women held the majority of jobs lost due to the pandemic, including those in the food and hospitality industry. Women account for 53% of workers in the leisure and hospitality sector, according to government data. It’s even worse for Black and Latino women, who have lost more jobs than anyone, especially in Carrie’s state, where the unemployment rate has doubled in a year.
New Orleans, which survives and thrives on tourists, is a shell of itself. Its raucous bars and sidewalks, usually filled to the brim with festivalgoers and bachelorette parties, are shuttered and empty. The Louisiana Restaurant Association predicts the city will probably lose 40% of its eateries. Residents like Carrie wonder if her city, like herself, will ever recover. It makes her last time on Bourbon Street seem like another life. It was Mardi Gras, and she was jostling around in a crowd of tipsy friends and strangers wearing a flower crown, a pale lace dress, and pearls. It was warm outside. Her body felt like her own. It was one of the last times she could remember not feeling so completely, utterly alone.
Her doctors think it’s all in her head. For weeks in the spring, Carrie was practically shouting from waiting rooms that she was not OK. She went to the ER two nights in a row toward the end of March because it felt like her body “had forgotten how to breathe.” She even gave her twin sister the password to her phone because she thought she was dying.
But her scans seemed normal, so doctors told her she was fine, gave her an antibiotic, and sent her home. Like many other long-haulers, she had to fight to get tested for COVID-19, and then wished she never did.
Because her results came back negative, physicians immediately scrutinized her mental health. One physician at her urgent care clinic diagnosed her with anxiety and gave her sleep meds. When she went back a week later, they accused her of faking symptoms in a ploy to get more pills. An infectious disease specialist recommended she meditate and take turmeric, explaining that if she healed her mind, her body would follow.
“She would say over and over, ‘something is wrong with me, something is really wrong with me,’ but it took me— It took us all a while to really hear her.”
“She kept talking about how she felt like she was dying,” Dorch said, recalling those dark spring weeks. “She would say over and over, ‘something is wrong with me, something is really wrong with me,’ but it took me— It took us all a while to really hear her.”
Women experience gaslighting — when a person, usually someone in a position of power, makes you doubt your own reality and sanity — all the time. But it’s especially rampant in the medical world, where doctors and nurses consistently downplay women’s pain, chalking it up to stress, anxiety, a desire for attention, or even a bad period. Research has shown that women, especially Black women, are consistently dismissed and undertreated when they seek care. One study found that women who went to the ER with severe stomach pain waited 33% longer to get treated than men with the same symptoms. Another report found women are prescribed less pain medication than men are.
Throw in a new, mysterious virus that is constantly stumping doctors, sickening people in different ways and sometimes not showing up in test results, and a woman’s experience trying to get care is like psychological warfare, according to Carrie and dozens of other long-haulers like her who previously spoke with BuzzFeed News.
“There’s a lot of hurt. This is happening to a lot of people and they need care,” said David Putrino, a neuroscientist in New York working with long-haulers. “A negative test is a giant black mark on these people’s medical records and livelihoods. My advice to doctors is listen to what your patients are telling you. Believe them.”
For Carrie, the experience was terrifying and isolating. All the support systems she thought were designed to care for her seemed to falter and crumble. No one else she knew had gotten sick like she had.
“It was the hardest time of my life,” she said. “And I couldn’t talk to anyone about it.”
When she’d mention her insomnia and heart palpitations, friends would nod sympathetically and say that they, too, had anxiety. “It’ll get better,” they’d tell her, “you’re just overreacting.”
Her own mom, who works in a hospital, suggested she get a psych evaluation. And her twin sister, Courtney Stuckwisch Wong, couldn’t help but think that Carrie was working herself up.
“It was the hardest time of my life,” she said. “And I couldn’t talk to anyone about it.”
Courtney was pregnant during the peak of the pandemic, and she did not see her twin sister in person until mid-May. When they reunited, Carrie’s appearance was startling. She’d lost 15 pounds, her cheeks were more hollow, and her usually vibrant demeanor had become weighed-down and lethargic.
Gaslighting her sister is something Courtney still feels “guilty” about to this day. “To experience that from the people who are close to her, that’s a huge betrayal,” she said. “I finally just said I have to believe her. She’s my twin sister and we’re very close. I have to trust that she knows her body, so I tried to listen more.”
It’s been 180 days, and Carrie still has no answers about what is going on in her body or any real direction from a physician on how, or if, she can heal it.
Before March, she barely went to the doctor. She didn’t even have health insurance for a few years because, like many young people, she felt invincible and it had never really crossed her mind. She’s now rotated between four different physicians, an internist, a pulmonologist, a cardiologist, and a few other specialists.
Between looking for jobs, she focuses much of her mental energy calculating how she can afford to get better. As of now, thanks to a little savings from a European trip she couldn’t take, she can still afford to pay the $562 a month for her health insurance without a job. She’d prefer a cheaper plan but is afraid of what might happen if she goes with a less robust offering. On top of that, she’s spent more than $1,500 out of pocket for treatments that would have been covered if she’d tested positive for COVID-19, not to mention a $1,200 hospital bill she’s still paying off in increments. And all those $60 copays to see all those different doctors add up.
Desperate to heal herself, she’s tried any alternative treatment out there, spending $450 on six acupuncture sessions, $600 on packages of IV infusions, and $1,000 on vitamins and supplements every month. She’s also turned to meditation and found that it helps pull her back when her mind starts to spin out. “It was the only thing I could do to make me feel better,” she said, “and it came from myself.”
On Aug. 15, five months to the day from her first symptom, Carrie took a gamble and held her breath. She accepted her first catering gig in nearly six months, a brunch for six of her friends. Before all of this, she would have sailed through this event in her sleep. But now it feels like the Olympics. She steeled herself for the shopping, prepping, driving, cooking, and bustling around outside in the thick of Louisiana’s heavy, humid heat. But sitting down afterward, she was surprised at how good she felt. The next day, she waited for the exhaustion, pain, and inability to catch her breath. “Nothing happened,” she said, smiling. “I was fine.”
For the past few weeks, Carrie has been collecting wins like this. Her mom came to visit and she felt, at some level, believed. She’s cooking for herself again and can clean up after herself. Showering no longer wears her out, and she can hold conversations for a few minutes longer. Getting coffee with a friend feels almost normal because she has other things to talk about other than how awful she feels. She’s even able to read a couple books without it feeling like “hard work.”
And just this week, when she went to see a cardiologist to assess her spiking heart rate, the doctor finally didn’t look at her like she was “crazy” and confirmed that they were seeing others just like her. “It was like night and day from when I first went to the hospital,” she said. Afterward, she felt elated, victorious, and, most importantly, validated.
“She’s starting to act a little more like herself, get closer to who she was,” said Dorch, her best friend. “She has accepted this new part of her identity, and even though she doesn’t like it, she wants to raise awareness about how hard it is and that there are no solutions.”
She’ll have good days, but then the weight of her new reality envelopes her with a rush of negative thoughts — “nothing is working, this sucks, I am never going to get a job” — and she sinks, hard. It’s this jerky “COVID-coaster” that she still hasn’t fully learned how to navigate, but she’s trying.
The nights can be the hardest part. She’ll spend some evenings across the street at her sister’s, but then she’s back in the empty shotgun-style brick house where she’s been living alone for the past eight weeks. Before the pandemic, her brother-in-law bought it to fix up to convert it into an Airbnb, but now it’s her landing spot until she gets a job.
She thinks about her new little nephew, Silas, and feels a pang of envy because she wants to be at the stage of having kids too. Right now, it feels very far away. Her last relationship ended in January. He wasn't ready for something serious, and she was left open, her heart aching. She’d been talking to a few guys before she got sick and then she disappeared from the dating scene. The thought of opening Bumble or Hinge is paralyzing. How could she explain the last six months to anyone she meets now? What if they don’t believe her, or believe in staying safe?
“Dating was something I had to look forward to when I was feeling better,” she said. “Now it’s the last on my priority list, even though I want that very much in my life.”
That’s not to say she’s given up. Courtney said her sister recently asked her how she knew her husband was “the one.” When they were in high school and in the throes of disentangling and differentiating their identities as twins, Carrie was the first to get a boyfriend and the first to get kissed. But now it’s Courtney giving the advice. It’s impossible to explain how “the one” happens, Courtney told her — but when the timing is right, things will just sort of click.
If there’s one thing Carrie understands now more than anything, it’s time, and the mix of all and nothing that occurs when it comes to a screeching halt. Her Instagram feed keeps filling up with posts of people from her past life who, like a lot of the country, are over it. All over her city, maskless groups keep having larger gatherings in smaller spaces while she's home alone in a house that’s not hers, wondering if she’ll ever be able to run around her favorite park again.
It’s hard not to feel like everyone is moving on with their lives and leaving her behind while she’s being forced to rebuild with pieces that feel impossible to lift. The virus has forced her to choose between healing her body and saving her career, and there doesn’t seem to be a right answer. The process, while painful, has also been revelatory. She’s learned that her self-worth is not tied to how much she does in a day. Her job doesn’t define who she is. She’s lost those things, and it’s OK; she’s still here.
There’s a small but growing sense of freedom, too. She’s thinking of switching careers and moving cities — because that’s the beauty of being back at zero: Anything can happen. “I think how I can do something great with this,” she said. “What would I do and be if I picked something completely different?
Recently, she’s gotten into signs and synchronicity. It’s kind of hard not to look for a deeper meaning when your entire life gets lost in less than a year.
“I kept seeing ‘9:11’ on clocks when I was getting sick, and at first I was like, Yep, that’s it, I’m gonna die,” she said, “but then I looked up what that meant, and it was all about one chapter ending and another one beginning.” ●
Update: This post has been updated to remove an instance of ableist phrasing.