As the Omicron wave slows down, New Yorkers with lingering symptoms face profound social stigmas
When Adina Gerver’s fever broke 11 days after she contracted COVID-19 in March 2020, she immediately felt relieved. Yet, her migraine refused to go away and she remained largely bedridden due to debilitating fatigue.
Then, the 42-year-old Washington Heights resident’s symptoms of heart palpitations, blurry vision and brain fog came back in January 2021 when she contracted COVID-19 again, and once again in December of that year. In that time, she also began to experience difficulties with social and professional interaction, which have persisted since.
Brain fog prevents her from communicating easily with friends and family. Everyday social decisions take longer and, at times, she blanks on simple words like “quarantine” or “raspberry.” A Harvard alumna with two graduate degrees, she has lost two of her three part-time jobs. “It’s uncomfortable to work when you feel like a horse is galloping through your chest,” Gerver, who has been vaccinated thrice with Moderna, said.
Gerver has long COVID, a condition encapsulating lingering symptoms that people experience long after being infected with the virus. It is estimated that at least 50% of people who survive COVID experience a variety of persistent physical and psychological health issues, nearly 80% of whom – according to the U.S. Department of Health and Human Services – are women. While medical professionals continue to identify possible reasons for the gender skew, new research suggests women long haulers are also most vulnerable to profound social stigmas.
A team of seven University of South Carolina researchers identified a series of personal, social and financial challenges faced by women long haulers, who remain affected due to their social roles and existing structural inequality. The study, published on Jan. 23, is based on interviews conducted with women participating in online communities of people experiencing long COVID from around the country. Researchers have stressed the need for new communication mechanisms in the digital sphere, which will help women cope with the stigmas and isolation.
Feeling left behind and wanting answers, Gerver is herself taking part in several long COVID studies and support groups. “We’ll either get better or we’ll adapt,” she said.
Like Gerver, Harlem business owner Christina Olenick, 33, is also a member of support groups for long COVID patients. She has had COVID-19 multiple times, with the first time also being in March 2020. “You’re just suffering in silence,” said Olenick. “I feel like my body is decaying and I’m going insane.” Over the past 23 months, long COVID stifled and shut down Olenick’s interactions with others. At her lowest, Olenick said she had fled her life in New York City for three months to be alone in Florida. “I was at the end of my rope.”
Lauren Stiles, a research assistant professor of neurology at Stony Brook University, said long COVID’s disproportionate impact on women is not a new phenomenon when it comes to post-viral symptoms, but rather, one that has generally been ignored. Stiles herself contracted COVID-19 early in the pandemic. Even back in February 2020, she could see post-viral syndromes for the patients around her, who complained of forgetfulness and lightheadedness.
Gerver and Olenick are among an increasing number of New Yorkers who are experiencing persistent symptoms. As the Omicron wave appears to slow down in the city, the threat of long COVID still exists.
“Of the 4.8 million confirmed COVID-19 cases in New York State today, we can expect to see 1.4 million New Yorkers developing long COVID,” said Stiles, who also leads research at Dysautonomia International, a non-profit that funds long COVID studies around the world. This number of patients could overwhelm the five autonomic disorder centers in all of New York, she added.
In a pandemic briefing at the North Central Bronx Hospital on Feb. 1, Gov. Kathy Hochul said more research is needed on long COVID. “We know that there are strong physical, mental, emotional and psychological symptoms associated with [long Covid] and we want people to take this seriously,” Gov. Hochul said. “There’s nothing more disturbing than to have gone through COVID and feel like you’re through the whole worst experience but the symptoms are lingering.”
She added that the state’s budget includes a $10 billion investment into the healthcare field – the greatest number in New York’s history.
At a public long COVID consortium held last Thursday, Mady Hornig, associate professor of epidemiology at Columbia University, said the Mailman School of Public Health is researching specialized interventions for long COVID and announced plans to create a free long COVID clinic in Washington Heights. “This time is critical because our research and education will change the face of long COVID,” Hornig said. “Who gets treated? What will their healthcare be for potentially lifetimes?”