Health
New Jerseyans long suffering from COVID-19 fight for relief from stigmatized disease
When Barbara Piasik contracted COVID-19 for the second time in July 2022, she hoped her symptoms would disappear within a week, just as she had during her first fight two years ago.
Instead, headaches, brain fog, and constant fatigue plagued the 68-year-old hospital administrator for 16 months.
“I got to the point where I didn't want to do anything,” Piasik said. “I have seven beautiful, gorgeous grandchildren, and when I stopped caring whether I saw them or not, I knew something was really wrong with me.”
Piasik is one of an estimated 65 million long-term coronavirus patients around the world. The novel coronavirus infection is characterized by a wealth of symptoms that begin immediately after infection and are difficult to cure, and these symptoms are often misunderstood.
Story continues after photo gallery.
Despite hundreds of millions of dollars being poured into research, there are no diagnostic tools or specific treatment plans for the long-lasting coronavirus.
Patients and doctors say the disease has been increasingly stigmatized by a society trying to move past the dark days of the pandemic. It is often dismissed as unserious, or worse, a myth.
“Many patients are frustrated because there's really no objective way to diagnose this,” said Dr. Jonathan Shamash, medical director of the COVID-19 Recovery Center at Hackensack University Medical Center. “There is,” he said.
“On the one hand, employers think they are abusing the system and that they should be healthy and able to work. On the other hand, so many people are sick and not functioning well.” Shamash said. when first infected. That's true. ”
Fourth anniversary of New Jersey's first confirmed coronavirus caseApproximately 23% of the state's residents surveyed reported symptoms of the coronavirus that had lasted more than three months. According to US Census data. Oklahoma and Montana had the highest rates at about 34%.
And while new research on the disease may be published almost daily, the coronavirus has long been a mystery, even to those infected, because it includes as many as 200 wide-ranging symptoms across multiple organ systems. It remains.
Headache, brain fog, fatigue
Barbara Piasik's first symptoms of coronavirus infection in 2020 were like most cases: a cough, fever and fatigue, followed by recovery within a week.
But in his second match in 2022, he punched his 68-year-old grandmother and never left her for 16 months.
Piasik was constantly suffering from headaches. She felt drained of energy from the beginning to the end of the day. After she accomplished her job as a hospital administrator, she returned to her home in Orange County, New York, and spent time in her bed.
“I just couldn't recover,” Piasik said. “My doctor kept telling me, 'Barbara, this is not you.' You have high energy and you're just dragging.”
As the days passed, Piasik developed depression, feeling hopeless that things would never get better.
“I got to the point where I didn’t want to do anything,” she said.
Adding to her frustration was the lack of resources for information and support. Apart from some online support groups, there was no formal patient community to commiserate with, and no foundations or nonprofit organizations to offer support.
Long COVID-19 infections are often a “diagnosis of exclusion,” meaning doctors use diagnostic tools such as blood tests to rule out other illnesses until no other plausible answer is found.
“The most frustrating thing is that I wanted a blood test to say, 'You've had COVID for a long time,' and we didn't have one,” she said. “When they said I had it, I thought, 'So do I really have it?'”
Doctors say this is always the case in long-term carriers of COVID-19. Either they didn't identify themselves as infected with the coronavirus in the first place, or the social stigma that has developed around it means that only a small percentage of people with the condition receive medical attention. I think he asked for help.
Even though the coronavirus has claimed about 37,000 lives in New Jersey and 1.2 million people in the United States, most of the population has dismissed it as a bad cold. The pandemic has spawned a geyser of conspiracy theories, anti-vaccine positions, and anti-science sentiment, all fueled by social media.
The long COVID-19 pandemic is no exception.
And because there are no tools to diagnose long-term COVID-19, it often falls into the same disease category as chronic fatigue syndrome and chronic muscle pain. Because these symptoms cannot be objectively proven, they arouse suspicion among the patient's colleagues, employers, and even family members and colleagues. friend.
“My biggest concern about the prolongation of COVID-19 is that it's so easy for people, even people in the medical community, to think we're making it up,” Bergen said. Dr. Jean Barbaro, Chief Medical Officer of Newbridge Medical Center, said: Piasik's work. Although Mr. Varvaro is not her direct informant, he has helped Mr. Piasik with counseling.
“They are easily ignored by doctors,” he says. “This is a real physiological disease. Just because we don't know what to do about it now doesn't mean it's not real.”
Symptoms of long-term coronavirus patients have changed as the virus itself has mutated. Dr. Ashwin Jasabedam, an infectious disease expert at Englewood Health, said the first patients with long-term COVID-19 symptoms showed lung problems, a severe cough, a rapid heart rate, and problems with their sense of taste and smell. They will likely come to the hospital with symptoms that were all common during the first wave of the pandemic.
However, as the new coronavirus mutated into the micron variant in late 2021, and dozens of subvariants have been created since then, symptoms in people who have had the coronavirus for a long time may also include extreme fatigue. , which evolved into headaches and brain fog. Treatment often focuses on addressing the most acute symptoms one at a time.
“Patients want a magic bullet to cure their disease, and that's not the case here,” Jasabedam says. “This leads to frustration, because we are in the early stages of research on this. What we are trying to give them is the reassurance that time is typically a patient's best friend. It’s about giving.”
My active lifestyle has changed completely
Darlene Dahl's battle with COVID-19 has been long and debilitating.
Before the pandemic, the West New York actress said she was very healthy and an avid runner. She “didn't even know what her blood pressure was,” said Dahl, 50.
But a month into the pandemic, she woke up feeling dizzy and weak. As the day progressed, it felt like her lungs were barely functioning.
“It was like a rock,” she says. “I had a hard time deploying. I had trouble breathing. I was trying so hard to get my lungs to work that I felt them for the first time in my life.”
Dahl was diagnosed with the new coronavirus, but did not recover. She felt a “strange sensation,” including a tremor, as if there was a cell phone inside her. Her vision was distorted. Her heart raced. She says she went to her emergency room 18 times.
“They kept saying, 'You have anxiety,'” she says. “All the tests would come back normal. At the time, they didn't know about long-term coronavirus.” Dahl was prescribed antidepressants and other medications, which made her feel worse.
“I looked at the calendar and thought I would be okay by summer,” she said. “Summer was gone, but I still felt terrible.”
Dahl said she felt some relief when she finally went to the COVID-19 recovery center in Hackensack. Over the past six months, she has started to feel better, and she credits, among other things, improvements in her diet, exercise, and meditation. She joined her Facebook support group and that helped too.
“I'm pretty young now, but what will I be like when I'm 60, 70?” she said. “I just wish more people in power would pay attention to this. The only way to find a cure is to put money into it.”
As for Piasik, he has made some progress in recent months.
Her medical team, which included a family doctor, a pain specialist, a rheumatologist and a psychiatrist, put her on a cocktail of medications, and she has been feeling better since early December. Her headaches are rare and her energy levels are up.
“I had no idea how bad I felt until I got better,” she said.
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