Thousands of patients with chronic medical conditions are speaking out about being devalued and dismissed during the COVID-19 pandemic after a Utah doctor’s tweet about her potentially dangerous heart condition went viral.
“Hi, I’m Sarah. I’m 35 and a doctor. I also have a heart condition that puts me at an increased risk for serious complications from covid,“ wrote Dr. Sarah Bernstein, a neonatologist at University of Utah Hospital. She attached a photo of herself smiling in her scrubs and a workout jacket. “Does the face of #chronicIllness look different than you thought?”
Bernstein also included the hashtag #IHaveAPreexistingCondition and sent the tweet after 11 p.m. about a week ago.
“What I was seeing in the hospital and ... the patients that I was caring for and the families, and then my own personal experience ... was kind of in conflict with a lot of the things I was reading in the news, on Twitter and actually hearing from friends, about the pandemic being over and about omicron being mild and no big deal,” Bernstein said in a news conference this week.
Now thousands of people have shared their own stories about living through the pandemic with chronic illness — and about coping with remarks from media personalities and even health officials that minimize the human toll of COVID-19 because deaths and hospitalizations disproportionately affect people who are old or have underlying medical conditions.
The implication, for many who fall into those categories, is that their lives are not worth as much as those who are young and illness-free.
“I’ve been living with one lung for 25 years,” Texas sportswriter Kelly Scaletta wrote in response to Bernstein’s post. “If I get Covid, I could very well die. I exercise. I have a good diet. I’m ‘healthy’ apart from the fact that I have one lung. This is a comorbidity that some people think means my life doesn’t matter.”
Those attempts to minimize COVID-19 incorrectly suggest that the virus is high-risk for only a small number of people, Bernstein said. But Utah health officials have said about half of the state’s adults are at elevated risk of serious illness from the coronavirus.
“When you look at the chronic illnesses that are listed, it’s things like diabetes, obesity, asthma, pregnancy — things that are really quite common,” Bernstein said. In fact, while the Utah Department of Health reports that 81% of the state’s coronavirus deaths were patients who were “high risk,” only 52% of hospitalizations were of people deemed to have risk factors for serious illness.
One reason Bernstein said she included her picture is that she looks healthy and young, contrary to images that people may have in their minds — that chronically ill patients have such low quality of life anyway that they aren’t worth protecting. Bernstein’s heart was damaged when she came down with the viral illness mono as a teenager on the cross-country running team.
“I went from running long distances to passing out after walking up a flight of stairs,” Bernstein said. “For quite some time, it really drastically altered my life and the things that I was able to do.”
She’s since undergone surgery and now describes herself as “super active.”
“But I do have that underlying condition that puts me at increased risk,” she said. “I think sometimes people do have this preconceived notion of what someone with multiple chronic illnesses looks like. And unfortunately, that makes it easy to kind of dismiss some of these things. ... People say things like, ‘Well, you don’t look sick to me,’ and that may be the truth. But it doesn’t make the underlying condition or what you deal with on sometimes a daily basis any less true.”
Not all those who posted their own stories of chronic illness were visibly young and healthy, though. Some were seniors, and some posted images of their medical treatments or hospital beds as they receive care for COVID-19.
Their voices are equally crucial, Bernstein said, because illness doesn’t make anyone’s life disposable.
“My hope is that people share their experience with chronic illness and what that really looks like, and the reality of it is, it looks like everything, right? So there are people who have significant physical deficits that you can see, and that is very real and very much at risk. And you have people who ... have what we call an invisible illness,” Bernstein said.
“So I love the fact that when people started sharing, it wasn’t just people who look like me,” she said. “There certainly were a lot of people around my age who are active and doing a lot. There are people who are older, there are children, there are infants, there are people of all different ages and different races and different ways in which chronic illness impacts their life.”
Bernstein also warned against COVID-minimizing propaganda that claims the virus is so mild and serious cases so rare that they don’t need to be factored into decisions to mask or get vaccinated.
“I think people have this idea, and you see this over and over again, that this is basically a cold or this is essentially the flu. And I think for a lot of people, that’s been their personal experience. But when you look at it as a whole, that’s again just not true,” Bernstein said “... And a lot of people have said things like people aren’t dying ‘of’ COVID, they’re dying ‘with’ COVID. And when you look at the number of excess deaths over the last couple of years, that’s just, quite frankly, untrue.”
Nowhere has that been more heartbreakingly real for Bernstein than in her own practice.
“As a neonatologist, ... prior to COVID, I had maybe attended two to three deliveries in the medical ICU because it’s not common for women of childbearing age in their 20s and 30s to be critically ill and sick,” she said.
Now, she said, “I truly cannot remember the last time I was on call at night and did not have to attend a COVID delivery. We’re just seeing a lot more complications in moms who you would expect to be healthy.”
That means babies are suffering complications, too, she said. Mothers are sometimes unable to bond with their babies for weeks after they’re born.
“And unfortunately, we have had moms who have died, and the trajectory of these family’s lives is changed forever,” Bernstein said. “If more people were able to see the things that we’re seeing, people would feel really differently about the pandemic in general and also making comments like ‘This is no big deal,’ or ‘It’s a cold,’ or ‘This is really mild.’”