#IHaveAPreexistingCondition: Viral hashtag seeks to show 'what chronic illness really looks like' amid pandemic

·8 min read
Dr. Sarah Bernstein, pictured here, spoke out on Twitter about what it looks like to live with an underlying health condition, sparking a viral hashtag.
Dr. Sarah Bernstein spoke out on Twitter about what it looks like to live with an underlying health condition, sparking a viral hashtag. (Marko Marinkovic)

For months, many people have couched news of COVID-19 deaths by mentioning that the majority of those who died from the virus had some sort of underlying health condition. Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention, is one of them — and she found herself in hot water earlier this month after making similar comments during an ABC News interview.

During the Jan. 7 interview, Walensky pointed out that most people who are dying of COVID-19 are those with preexisting medical issues. "The overwhelming number of deaths — over 75 percent — occurred in people who had at least four comorbidities," she said. "So, really, these are people who were unwell to begin with." (A comorbidity, in case you're not familiar with the term, means that someone has one or more diseases or conditions, according to the CDC.) Walensky also said that this was "really encouraging news in the context of Omicron."

The CDC's list of comorbidities that increase a person's risk of developing a severe form of COVID-19 is staggering and includes everything from having a history of cancer to heart conditions and diabetes.

Walensky and other CDC officials spoke out after the interview and pointed out that her comments were taken out of context. A longer clip later released by ABC News had Walensky stating a "really important study" of 1.2 million vaccinated people found that only 0.003 percent of them died of COVID-19. Of those who died, most had underlying health conditions, she said. She also tweeted about people with underlying health conditions, writing, "We must protect people with comorbidities from severe #COVID19. I went into medicine — HIV specifically — and public health to protect our most at-risk. CDC is taking steps to protect those at highest risk, incl. those w/ chronic health conditions, disabilities & older adults."

Days after Walensky's comments, one doctor decided to speak out on Twitter about what it looks like to live with an underlying health condition.

"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. #IHaveAPreexistingCondition Does the face of #chronicIllness look different than you thought?" Dr. Sarah M. Bernstein, assistant professor of pediatrics, division of neonatology at the University of Utah School of Medicine wrote alongside a photo of herself sitting on a couch, smiling. "My life matters and so do the nearly 10,000 Americans who died from COVID last week. Please feel free to add your own image/story so we can show people what chronic illness really looks like. #IHaveAPreexistingCondition."

Bernstein's tweet took off, earning nearly 60,000 likes, more than 8,000 retweets and plenty of comments from other people who have underlying health conditions.

Bernstein, who works in a neonatal intensive care unit, tells Yahoo Life that her work inspired her tweet. "Every patient that I care for in the NICU starts their life off with a compromised immune system," she says. "They cannot get vaccinated. They cannot protect themselves. I wish that I could share their pictures and tell their stories so that people could see who they are hurting when they choose not to wear a mask or wash their hands, but I can’t, so I chose to share my own."

Bernstein has a heart arrhythmia called supraventricular tachycardia (SVT) and postural orthostatic tachycardia syndrome (POTS) and has had heart surgery to try to correct her irregular heartbeat. She says she also takes medications twice a day to help control the rhythm of her heart.

"I think it's easy for people to dismiss numbers and statistics, but it's much harder to dismiss an individual," Bernstein says. "When people say, 'Only 0.4 percent of COVID deaths occur in children,' I hear, 'over 12,000 children have died a preventable death.' When people say, 'well, they had chronic conditions,' I hear, 'people with underlying health problems don't matter.' I have a chronic condition. This is my face, and my life matters. I am worth fighting for, and so are they."

Many people who responded in the comments of Bernstein's post shared similar sentiments. One of them is Teresa Pollack, a 33-year-old with type 1 diabetes, who included a photo of herself smiling while noting that she wants "to stay healthy today and tomorrow."

Pollack, who lives in Illinois, tells Yahoo Life that she decided to share her story after seeing Bernstein's tweet. "I saw that she looked like me," she says. "I was even sitting on my couch like her when I read it. I've had type 1 diabetes for a very long time. It's always something that seems to be invisible to the average person."

Pollack points out that "the general public's assumption is that people with preexisting conditions look a certain way, but there are so many of us out there, and we're all different. You have no idea what people are living with, going through or what they've been through."

Bernstein's message also resonated with Kit Chase, a 27-year-old with asthma living in Illinois. "Empathy for others is declining as more and more people get fed up with restrictions," he tells Yahoo Life. "The idea of, 'Well, it's not affecting my life, so it's not really a problem,' has the potential to cause so much damage."

Chase says that the "disregard for the lives of people who have preexisting conditions is horrific." He adds, "Sickness doesn't always look like hospital beds and IVs and ventilators. Sometimes it looks like a healthy, active, young adult or an innocently happy child. Why should our lives matter less because of things outside our control?"

Chase says the pandemic has meant "a lot of isolation" for him. "I've been a martial artist for 22 years [and] I have not been able to train the way I used to or attend my karate classes," he says."When I go for walks, I often wind up in the middle of the road to avoid people who refuse to properly maintain an acceptable level of distance when they pass me while maskless. I do not go out for food. If my family goes out, they either bring me back something, or I find food some other way because I am uncomfortable being around people who aren't masked."

Bernstein says it has been a "balance" for her to navigate the pandemic safely. "Because I’m a physician, I was never able to isolate at home or work remotely," she says. "Working in the hospital and seeing patients with COVID automatically puts me at higher risk, so I do my best to take as many precautions as I can — I wear a mask, avoid enclosed spaces when possible, wash my hands a lot and got the vaccine as soon as I was eligible, including the booster. I have also limited my social circle to people who are taking similar precautions so I can minimize my chance of exposure."

Pollack says she has learned to make decisions based on her personal risk. "I'm taking advantage of mitigation measures like vaccines and masks," she says. "Am I ready to go to a concert with a million people? Probably not. But I am able at this point to assess personal risk and make informed decisions about being in a small gathering of friends and family who I know have also been vaccinated and are practicing safe public-health measures."

Bernstein says she has "loved watching people share their stories and pictures and seeing the way they support each other" in the wake of her tweet.

"Living with chronic illness, especially an invisible one, can be extremely isolating, so watching people connect over shared experiences has been a really meaningful experience for me," she says. "If one person feels less alone, changes their perspective on how they view chronic illness or takes extra precautions before going out in public, then it's more than worth it."

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