Disappearing Act: Ellie’s Long COVID story

Among other things, Ellie was once a traveler. At age 66, she’s now retired, a time she’d envisioned would be spent peacefully pursuing her hobbies and seeing the world. Instead, she has to sleep on her living room couch because she can seldom walk up the stairs of her three-story home anymore. Several years into her battle with Long COVIDPersistent symptoms following recovery from acute COVID-19., her bedroom has become an exotic locale. 

A resident of Eastern Pennsylvania, a trip to her nearby hometown in New Jersey feels far beyond her capabilities now. And even her quieter hobbies, like writing children’s stories and making art, have become more difficult. “It’s difficult just functioning,” she explains. “I don’t do any of the things I did, I don’t go any of the places I used to go. None of them, absolutely none of them. It takes me a whole day to take care of my animals- it didn’t used to.” 

An animal lover, Ellie cares for three dogs, three cats, a chinchilla and tortoises. Her husband Todd can usually do the lion’s share of the upkeep, but he travels for work; during those periods, she spends whole days making sure the menagerie is fed and cared for in between resting, feeding and caring for herself. 

The animals are a lot of effort, but they’re also a lot of comfort in a world that has increasingly isolated Long COVIDPersistent symptoms following recovery from acute COVID-19. patients. Ellie wears an N95 respiratorA mask that filters out 95% of airborne particles. outside her home, knowing she must avoid reinfectionBecoming infected again after recovering from an earlier infection.; it attracts stares. “People think I’m cuckoo these days,” laughs Ellie, in her direct way. But even well-meaning community members aren’t sure how to protect Ellie. “A lot of my friends don’t come over because they’re afraid they’ll make me sick,” reflects Ellie, “I don’t blame them.”  

Ellie developed Long COVIDPersistent symptoms following recovery from acute COVID-19. after multiple infections. At first, she experienced a variety of strange symptoms that doctors couldn’t explain. No one, including herself, connected her new health issues to a prior COVID infection. Neither she nor her doctors had even heard of Long COVIDPersistent symptoms following recovery from acute COVID-19. at the time, and everything from blood work to CT scans came back normal. Specialist after specialist was stumped. “My blood pressure was crazy, but there was nothing showing up on tests. Yet I was sick as a dog,” recalls Ellie, “my doctor said, ‘your best bet is to go home and stay with your therapy dog.’ That’s what he told me.” 

A year passed. Then, over Christmas 2022, she was sitting in her bedroom upstairs when she suddenly started to shake violently. Her blood pressure began spiking higher and higher. She carefully worked her way downstairs and found Todd, who called an ambulance. In the hospital, the doctor’s assessment shocked them both. Despite having had no prior symptoms of acute infection, she now had COVID (again), pneumonia, and sepsis. It was the sepsis that almost killed her, keeping her confined to the ICU for days. “I’ve never been the same since,” Ellie says. 

From that time, Ellie’s had difficulty with her blood pressure, developed severe GI issues, has muscle weakness and an inability to exercise, struggles with brain fog, and has a compromised immune system. But like most Long COVIDPersistent symptoms following recovery from acute COVID-19. patients, she wasn’t diagnosed for some time; in fact, she found out about the condition not from her doctors, but from her husband. 

“My husband went to a talk in Washington DC about antivirals,” Ellie says, “a friend of ours who has a little girl who’s very sick was there. She’s got gastroparesis. My friend picked up a pamphlet with all the symptoms you could get if you had long COVIDPersistent symptoms following recovery from acute COVID-19., and I said, ‘oh my god, this is what’s wrong with me.’ I heard the doctor there speak and connected with him, and he sent me to a Long COVIDPersistent symptoms following recovery from acute COVID-19. clinic just as it was shutting down. That’s where I got diagnosed.” 

Like many patients, Ellie has come up against the limitations of dwindling resources allocated to the disease as grants dry up. Although she was able to find a local Long COVIDPersistent symptoms following recovery from acute COVID-19. clinic, as mentioned above, it quickly shuttered soon after she received her diagnosis. “They had no choice,” Ellie says, sympathetically. The clinic simply didn’t have any more funding. 

Ellie has dealt with disability, medical issues, and public health negligence throughout her life, from her childhood in New Jersey where, she says, she grew up in a toxic area. This early exposure to environmental contaminants may have contributed to later health problems.

An artist, Ellie attended the both Art Students’ League of New York and the world-famous Pratt Institute before landing at the School of Visual Arts, also in New York City. She graduated with two degrees; a BA in Commercial Arts and a second BA in Fine Art and Art Therapy. She’d end up using both in her career. 

After graduation, she first went the commercial route, designing soft toys for children. But after spending some time in that field professionally, her first medical issues arose; she developed Multiple Chemical Sensitivity Syndrome. “It made me very sick,” she recalls. She was forced to leave the commercial world, which relies heavily on chemical inputs. She moved to Florida and began to recover. 

Ellie’s story is one of resilience and adaptability; despite being unable to work with many industrial chemicals, she found workarounds. She began using non-toxic substitutes for personal projects. In order to continue pursuing photography, she partnered with another artist; Ellie would shoot the photos and the second artist would develop the images. 

After her health improved, Ellie returned to school and studied to be a Special Education teacher, which she did for a number of years. Eventually, she met Todd, her husband, who became the full-time breadwinner as she made use of her second degree in art therapy. “I helped out and volunteered in schools,” she says, “I worked in nursing homes, I would do different projects for children in hospitals, things like that. I don’t do it very well anymore because I’m out of practice, but I learned magic!” 

These days, Ellie and her therapy dog can no longer visit children’s hospitals and nursing homes to volunteer, teach art, or do magic. She’s too sick, and infection risk is too high.

In fact, the hospital is one of the highest risk places Ellie and many other Long COVIDPersistent symptoms following recovery from acute COVID-19. patients find themselves. Even when asked, medical staff are often reluctant to mask, and some of them outright refuse. “I went for an X-ray when I had pneumonia and the tech wouldn’t put on a mask,” recalls Ellie, “This was in a medical facility! They act like, ‘oh, what’s your problem’. Well, you come live my life and you’ll find out what my problem is!” 

Along with seeing her doctors for Long COVIDPersistent symptoms following recovery from acute COVID-19., Ellie has to visit medical facilities because she is a cancer survivor multiple times over. She has survived lymphoma and two different types of breast cancer. Her cancers are now in remission, but she is concerned about what COVID’s immune damaging effects will mean for her prognosis. She is also frustrated by the lack of knowledge oncologists demonstrate when it comes to COVID and infection prevention. 

Ellie is as adaptable as ever; it’s the world that has let Long COVIDPersistent symptoms following recovery from acute COVID-19. patients down and left people behind to suffer. In past years, Ellie says, she would try leaving home more, but no longer finds the risk worth it. “I tried one day recently to be normal- if you want to call it normal, I had my N95 on,” Ellie relates, “I just went to extremely safe places, but I wound up sick.”

Church used to be the one place she’d visit in person, but ultimately she exchanged this for a virtual church. “I couldn’t get there anymore,” she recalls, “I had trouble driving. So I tend not to go to many places anymore. I’m basically a home dweller.”

When asked what she wishes the public knew about Long COVIDPersistent symptoms following recovery from acute COVID-19., Ellie doesn’t hesitate. She frames her concerns around others’ futures, not her own. “People are under this impression that COVID is not dangerous,” she sighs, “it’s not true.” 

Long COVIDPersistent symptoms following recovery from acute COVID-19. patients’ stories are inevitably stories of loss from two sides; the loss of health, safety and community experienced by sufferers like Ellie. And then there is the second loss, the loss of people like Ellie suffered by the community, where children in local schools and hospitals will no longer learn art, meet her therapy dog, or watch, wide-eyed, as she shows that she knows just a little bit of magic.

-Julia Doubleday