The Utah Department of Health and Human Services holds a media availability to release a new report on Long COVID prevalence in Utah in Salt Lake City on Oct. 2, 2024. (Katie McKellar/Utah News Dispatch)
It’s a monstrosity — a creature that’s part spider, part hyena, and part rabbit, with one blind eye and a drooling maw.
An art piece by Ella Udell, a long COVID patient, as part of the “Meet My Monster Project” and included in a new state report on the prevalence of long COVID in Utah. (Courtesy of the Utah Department of Health and Human Services)
The depiction, by long COVID-19 patient and artist Ella Udell, is one of several disturbing and heart-wrenching art pieces included in a new report released Wednesday by Utah health officials on the prevalence of the mysterious but very real and troubling chronic condition that continues to plague many Utahns after a COVID-19 infection, sometimes years later.
Udell’s piece, created as part of the “Meet My Monster project,” is meant to illustrate what it’s like to contend with the symptoms of long COVID day to day.
“My monster is part trapdoor spider,” she wrote alongside the creature, because “it lives in a hidden burrow underground and stalks me.” Part hyena, because “it always seems to mock me” with “loopy brain fog and frequent maniacal migraines.” Part rabbit, because “I feel like a lab animal constantly injected, poked, prodded, jerked around.” And it has one blind eye for the “sudden literal blindness I sometimes experience as well as visual events that no one can explain.”
“My monster is not evil or malicious but rather confused, clunky and unpredictable,” Udell wrote. “This monster has been with me since 2020.”
That art piece along with several others by Udell was printed on a display board in a conference room at the Utah Department of Health and Human Services’ offices in Salt Lake City on Wednesday, when state officials unveiled their first-ever report on long COVID in Utah and invited media members to interview patients who have suffered and continue to suffer with it today.
Long COVID is defined as an “infection-associated chronic condition present for at least three months that includes a wide range of symptoms lasting months to years that is just starting to be understood,” the report states. Symptoms include fatigue, memory problems, lightheadedness, shortness of breath, fast heartbeat, chest pain, changes in taste and smell, and potentially more.
“It can significantly impact a person’s quality of life and well-being. Diagnosis is challenging because there is no simple test or validated screening tool,” the report states. “Treatment options are limited and do not guarantee resolution of the illness. Our understanding of what Long COVID is and how to define it is being continually refined.”
Blake Bockholt — who used to run half marathons on weekends before COVID-19 changed his life, and now he can’t make it up the stairs to his kids’ bedroom — parked his wheelchair so the images were just outside of his line of sight.
“I can’t even look at it,” he said, adding that the depictions remind him of the “despair” he’s felt dealing with long COVID and everything it’s taken away from him. He said “one of the hardest parts” about the condition is the devastating impacts it can have on mental health.
“It’s one thing to have an injury, but know that injury will get better,” he said. “It’s a whole other thing when you don’t have the energy to get out. Everyone else is doing things you wish you could do. You’re stuck in your body; you’re stuck in your mind. It leads to mental health crises.”
Brockholt, whose struggles with long COVID were detailed in an in-depth report by the Deseret News in 2023, paused, seemingly gathering his thoughts, before going on to explain just how dire his mental health has gotten at certain points while dealing with the exhaustion.
Blake Bockholt, a long COVID patient, talks about his ongoing daily struggles with the condition at a media availability hosted by Utah health officials in Salt Lake City on Oct. 2, 2024. (Katie McKellar/Utah News Dispatch)
“I know what it’s like to not go into work on a Friday afternoon because my wife had to make a phone call to 988 in order to keep me around,” he said, referring to the suicide prevention and crisis hotline.
“I see the same thing in that art,” he said. “The despair.”
It’s taken “lots of therapy,” he said, but he’s still fighting, even though it’s been frustrating for himself and hard on his family.
Ever since he tested positive for COVID-19 in January 2022 and soon after began feeling the full effects of long COVID, “every day is still a struggle,” Brockholt said. He’s on long-term disability now, which he said was a good move for both his physical and mental health. But to this day, “I feel like running a marathon was easier than just every single day of this.”
I feel like running a marathon was easier than just every single day of this.
– Blake Bockholt, long COVID patient
It’s hard “not being able to show up to my kids’ soccer games and performances,” he said, pausing to choke back his emotions before adding he missed a soccer game just this weekend. “I feel like Rip Van Winkle. I’m sleeping through the most important events of my life. It’s hard.”
But Brockholt expressed gratitude for the state report shedding light on long COVID and patients’ struggles. Even though nothing in it was particularly surprising to him since he’s been dealing with it for more than two years now, he hopes it will raise awareness as well as increase both the public’s understanding, as well as help doctors continue to learn how to best treat it.
Utah’s first-ever long COVID report
These are some of the top takeaways from the new state report on long COVID:
In 2024, nearly 1 in 5 adults in Utah had ever experienced long COVID, and 1 in 12 are currently experiencing long-term symptoms.
Long COVID is more common among women, people identifying as Hispanic/Latino or LGBTQ+, people in their 40s and 50s, and people who did not get vaccinated against COVID-19.
People with long COVID report poorer physical health and greater rates of depression, anxiety, social isolation and financial hardship.
Compared to other states Utah consistently sees a high prevalence of long COVID, ranking 11th for the number of adults who have ever experienced symptoms and ninth highest for people who are currently experiencing symptoms, according to data from the national Household Pulse Survey.
Source: Utah Department of Health and Human Services
The report’s primary author, Rachel Kubiak, a state epidemiologist, said there are still many unknowns around long COVID and why it’s prevalent in Utah compared to other states. Perhaps it’s the conservative state’s vaccination rates. Maybe its younger population. Maybe higher elevation or poor air quality could play a role, “we don’t know.”
The report is a first step, Kubiak said, adding that state officials plan to expand on the work by continuing to collect information through surveys about what Utahns are experiencing and if the condition continues for years to come.
“This report is important because it is the first one to be done in Utah, and it is among the first to be done in any state health department to describe long COVID, specifically, the way that we do,” she said. “Any information is new information, because it is a new, not very well understood disease. So knowing now that it affects 1 in 12 adults, that’s a pretty powerful number. That’s something we’ll continue to keep in mind as we continue to do this work.”
The report also includes resources for medical providers to learn how to recognize and treat long COVID, as well as information pointing patients to clinics specializing in long COVID care.
Long COVID is “an infection-associated chronic condition that scientists and medical experts are just beginning to understand,” the report states. “Although infection-associated chronic conditions are not new (persistent Lyme disease, multiple sclerosis), they are not well-understood yet. There are ongoing trials to help us better diagnose, treat, and prevent Long COVID.”
The report also urges Utahns to protect themselves from long COVID by staying up-to-date on COVID-19 immunizations.
An art piece by Amy Cuddeback, a long COVID patient, titled “The Crushing Aftermath of COVID-19.” It was included in a new state report on the prevalence of long COVID in Utah. (Courtesy of the Utah Department of Health and Human Services)
“The only way to fully prevent Long COVID is by not getting a COVID-19 infection,” the report states. “This means actions like masking in crowded indoor settings or improving indoor ventilation can also be helpful. Prevention is important since there is no cure for Long COVID.”
It also urges people to offer support to those suffering from “pain and isolation that often comes” with long COVID.
Lisa O’Brien, who founded the Facebook page Utah COVID-19 Long Haulers as a support group for those suffering from long COVID, expressed gratitude for the state report. Like Bockholt, nothing in the report surprised her, but she said he’s happy to see state officials gathering data and spreading awareness, which she hopes will eventually lead to more understanding and better treatment.
O’Brien said she got COVID-19 in March 2020, and about eight weeks later, she said she started to have “really weird, crazy symptoms,” including erratic heart rate fluctuations. She said it took her roughly a year before she could finally get out of bed and go for a walk without her heart rate spiking. Today, she said she’s still dealing with symptoms, just not as often, but now she’s been diagnosed with atrial fibrillation, which is a type of arrhythmia, or abnormal heartbeat.
Through her Facebook group, O’Brien said she knows how lonely the disease can be — and how many people tell her they feel like they’re going “crazy” because of the strange symptoms and a lack of expertise in the medical field. But now Utah has a long COVID clinic, and the report is one more resource to help.
“Obviously nobody has all the answers. But there are ways we can manage, and I think understanding what you have is a key step,” she said. “Once you know what you have, then that opens doors to finding ways to at least improve your quality of life.”
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