Vào một buổi sáng thứ Hai ở Irvine, Courtney Garvin ăn sáng trên giường, nó đã được đối tác của cô đặt ra trước khi anh ta đi làm.
Cô nói xong liền đi vào phòng tắm. Cô ngồi xuống đánh răng và rửa mặt.
Từ đó, cô đi bộ dài nhất trong ngày: 25 bước đến văn phòng không sử dụng của mình, nơi cô nằm xuống giường và bắt đầu đan và vuốt ve con mèo của mình.
Vào giờ ăn trưa, cô đi thang máy – một chiếc ghế có động cơ gắn vào cầu thang – xuống bếp để ăn bữa trưa mà đối tác của cô, Connor Mayer, đã chuẩn bị. Cô đặt thức ăn vào lò vi sóng và ngồi xuống một lần nữa.
Garvin, 37 tuổi, đã nhiễm COVID-19 cách đây ba năm và hiện mắc COVID kéo dài, một tình trạng mà khoảng 15% người trưởng thành ở California báo cáo đã trải qua, theo dữ liệu do Trung tâm Kiểm soát và Phòng ngừa Dịch bệnh thu thập. Cô và Mayer nói rằng thế giới của họ đã bị thu hẹp. Cô ấy không còn có thể làm việc.
“I wasn’t expecting to be in a situation like this for another 50 or 60 years, where I lose this much functionality and require full-time care. Chronic illness takes away so many of life’s joys, both big and small,” Garvin said in an email. (Due to the debilitating fatigue, some of the interviews with Garvin were done over email or Mayer spoke on her behalf.)
Mayer’s life has completely changed, too.
On mornings when he is working, he wakes up, makes coffee and goes on a run. Then he makes her oatmeal and tea for breakfast, leaving them in thermoses to keep them warm. He also makes her lunch and a smoothie. After making sure she has what she needs, he bikes to work. After 5:30 p.m., he does the dishes and cooks dinner.
She walks about 150 steps daily and goes on a short walk in the neighborhood with Mayer pushing her in a wheelchair, she said.
Garvin and Mayer said they shared their story in the hope of helping other people understand the impact this illness has had on their lives.
“I don’t think anyone expects something like this to happen to them, but here we are,” Mayer said in an email. “When we got COVID in March 2020, we had no sense of the long-term risks associated with it. That sudden loss of independence was tough for both of us.”
Long COVID is the broad term used to describe multiple symptoms that can last weeks or longer after an initial infection with COVID-19. These include blood circulation issues, shortness of breath, neurological issues, gastrointestinal problems and fatigue, among others. The severity of the symptoms, and their impact on people’s daily lives, can vary widely.
Some people see symptoms improve over time, while others have gotten better and then had some symptoms return.
The CDC has allocated $25 million to continue studying long COVID, and groups such as the Patient-led Research Collaborative are working on research on the long-term effects of COVID-19.
While much of the public has begun to move on from the pandemic, people like Garvin are left to deal with the complex medical system and a condition that has no known treatments. Navigating the medical, financial, mental and physical challenges of this illness is challenging.
Before getting sick in March 2020, Garvin worked as a storyboard artist and a touring musician as a member of the Courtneys, and Mayer was in graduate school. Mayer is now an assistant professor in the Department of Language Science at UC Irvine. When he is not working, he is a full-time caregiver for Garvin and limits his social interactions to avoid getting her reinfected.
Garvin stopped working in the fall of 2020 when her fatigue, migraines and shortness of breath made it difficult for her to walk more than a few steps and speak more than a few words.
She went on disability and started seeing doctors, many of whom dismissed symptoms while her health continued to decline. She moved to Irvine during the summer of 2021, where she was diagnosed with long COVID.
“The consistency of the experience of going to doctor after doctor, seeking help, and being disbelieved and condescended to is really surprising to me,” Garvin said. “It points to the underlying systemic issue in our culture where we see chronic illness as a moral failing.”
Besides the mental and physical challenges, Garvin noted that infrastructure issues such as the lack of wheelchair-high counters and a scarcity of automatic doors at doctor’s offices and the Department of Motor Vehicles have made her feel invisible.
The couple live in a townhome provided by UC Irvine that is considered compliant, according to the Americans with Disabilities Act, but the unit’s stairs pose difficulties for Garvin. After several phone calls with the housing authority, letters from doctors and insurance, the couple installed a stair lift, but paid for it out of pocket.
Garvin and Mayer have spent roughly $62,000 on medical expenses, including compression garments ($450), the stair lift ($2,750), support groups ($860) and copays ($3,300). They’ve also spent countless hours in waiting rooms, on hold with physicians and dealing with insurance and disability paperwork.
Post-viral illnesses such as long COVID are not new, but some doctors across California are addressing long COVID as a new phenomenon.
“It’s grim to think of how many people’s lives might be changed for the worse because we didn’t understand the long-term effects well enough to factor them into considerations about preventative safety measures,” Mayer said.
Dr. William W. Stringer, a pulmonologist and critical care doctor who started the post-COVID program at Harbor-UCLA Medical Center, is trying to better understand those long-term effects.
“I think there are a lot of people that are unrecognized by specialists and doctors,” said Stringer, who has treated patients with some of the worst long COVID symptoms. “It is also a huge financial problem, between the lack of social work and assistance for food and trips to the doctor.”
Mayer said it’s frustrating for him to see a serious health issue have low public awareness and sympathy. Toward the end of the interview, Garvin said she was exhausted and had Mayer speak on her behalf.
“Strength is something I feel pretty short on at this point,” she said. “I’m completely worn out.”
This story originally appeared in Los Angeles Times.