Up to 30 percent of people who tested positive for the coronavirus have developed long covid, and some who had no symptoms initially are now battling with long-term effects of the virus.
Officially known as post-acute sequelae of covid -19 (PASC), long covid is a condition in patients who’ve tested positive for the coronavirus for 30 days or more, according to the National Library of Medicine.
It can be debilitating and includes symptoms such as prolonged fatigue, night sweats and tremors, confusion and memory loss, insomnia, joint stiffness, heart palpitations, and headaches. It can affect organs including the heart, lungs, eyes, kidneys and more.
Long covid symptoms are in addition to the common symptoms of regular covid-19 such as coughing, loss of taste and smell, fatigue and joint stiffness.
Long covid is still greatly under-researched and misunderstood, making the journey of dealing with it more difficult for those who have it. Some people who have long covid said they were initially asymptomatic or only had mild symptoms before experiencing various health issues that made them realize they had long covid.
Others said they’ve had problems proving they are sick to doctors and health professionals who aren’t taking them seriously.
Despite following all of the covid-19 guidelines and encouraging others to do the same, Linda Timmer began suffering from fatigue and confusion in 2020. She tested positive for covid after continuing to experience “unusual brain confusion.”
“They weren’t really putting that in the list of symptoms to go get tested for,” Timmer told CNN. Now 64, Timmer said she “never expected to be positive” and was “devastated” by the news.
Her symptoms only worsened, ranging from hallucinations and overheating to loss of taste and shortness of breath. Eventually Timmer had to retire early and move in with her sister, then her son.
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Her story is not as uncommon as some may think.
Nick Güthe lost his wife, screenwriter Heidi Ferrer, to suicide after she experienced a 13-month battle with long covid. Ferrer initially tested negative for the virus but a month-and-a-half later, her symptoms worsened. Unable to walk without severe nerve pain, Ferrer had brain fog, fatigue, tremors, gastrointestinal issues and insomnia.
“She had tremors in her upper torso and shoulders and upper extremities, but they weren’t in the legs yet, but that’s where she thought she was going to end up,” Güthe said. “And she didn’t want to live in a wheelchair.”
In a separate interview with BuzzFeed, Güthe said a neurologist didn’t believe it was long covid when they showed him a video of her tremors and insomnia. Instead, the doctor spoke about his own battles with depression, Güthe said.
Ferrer told her husband, “He’s gaslighting me.’” She killed herself the next day.
“Was that the final straw? It might have been, I don’t know,” Güthe told BuzzFeed News. “But I know that he was not believing her.”
There are many other stories like Timmer’s and Ferrer’s when it comes to battling long covid in which patients have mild or no symptoms and then endure the most difficult health battle of their lives.
Dr. Benjamin Abramoff is the director of the Post-Covid Assessment and Recovery Clinic at the University of Pennsylvania Perelman School of Medicine.
One of the reasons for diagnosing and treating long covid is because “we’re all kind of learning on the fly, with guidance coming out on a day-to-day basis,” he said.