According to the John Hopkins Coronavirus Resource Center, more than three million people across the world have been diagnosed with COVID-19, a million of those from the United States alone. Too many have died. And there aren’t enough words to express the tremendous sorrow we all feel for the lives lost.
But there are survivors. Officially, more than 900,000 people have recovered from the deadly virus. Unofficially, the count is no doubt higher. More people have recovered than have died.
And that’s good news. Most people will survive the novel coronavirus that indiscriminately chooses its victims. Most people will recover.
But as with every single aspect of this disease, recovery is confusing, and full of questions, and not necessarily a linear experience for many.
Some people will recover from COVID-19 in about two weeks and their recovery will be a victory story to tell and share to give others hope. But, some people take much longer to recover, and the recovery is very up and down. Many have lingering issues long after a positive test confirmed diagnosis.
For example, Kathleen in New Jersey, an otherwise healthy 37-year-old woman, shared with Scary Mommy that her symptoms began on March 14th, with a vicious headache and full body aches. Three days later, she developed a fever. By day seven, she was feeling better and hoped the worst was over, only to be hit with another round of symptoms—cough, weakness, headaches—on day 10. As of this writing, more than a month after her initial symptoms, her sense of smell still hasn’t returned to normal, and running is still a struggle as her lungs are taking time to heal.
Even the word “recovery” or “recovered” is murky. The official guidelines from the CDC suggest that someone can stop isolating if either they are fever free for at least 72 hours (without the use of medicine), symptom free, and test negative two times in a row, 24 hours apart, or fever free for at least 72 hours (without the use of medicine), symptom free, and at least seven days have passed since the first symptoms appeared. With testing still in short supply in many areas and a recovery that comes in fits and starts, as it did in Tighe’s case, “symptom free” is a questionable state.
There isn’t much in the way of peer reviewed science on patient recovery. And that makes complete sense. The scientists and researchers who would study patient recovery and put out the statistics and reports and studies are busy putting out statistics and reports and studies to answer questions about active infections and potential world-changing treatments. As they should be.
That means most of what we know about patient recovery is anecdotal, shared via Facebook posts or word of mouth, or in the opinion column of The New York Times.
Fiona Lowenstein, a 26-year-old writer who was hospitalized for COVID-19, wrote in The New York Times that each week of her illness brought new symptoms, including troubling neurological ones, like struggling to focus and short-term memory loss, and that her recovery seemed to stop and start, wherein good days were followed by bad days. While feeling alone in her healing process, she began a support group for other COVID-19 survivors and quickly learned that her long and uneven recovery wasn’t unique to her.
Survivor groups are popping up on Facebook, and the posts there tell similar stories. People of every age are writing to share how too many weeks into their initial diagnosis they are still feeling the effects of their illness, or how discouraged they feel that after a few days of feeling fine, they are once again spiking fevers, or wondering how long until they’ll be able to walk around the block without needing a rest. Kate Porter, a 35-year-old mother with no underlying health conditions, shared with NBC news that she’s had a fever nearly every day for 50 days, despite testing negative for COVID-19 after her initial positive test. She reported that mornings start relatively normal, but as the day progresses, her temperature rises as her cognition falters and something like a “weird forgetfulness” comes over her that makes finding words difficult.
Sami Aviles, a healthy 31-year-old, shared with her support group that though she’d never needed medical attention, after 21 days of symptoms, she was still coughing up blood and her fever was breaking, only to return again “like clockwork”. Andrew Dumont, 32, had tested negative for COVID-19 after his initial positive test, but two months after his initial symptoms appeared, he was still suffering from numbness in his limbs and shortness of breath, symptoms severe enough to cause two visits to the emergency room.
As more people begin to recover, more are beginning to share and post and learn they are not alone in these frightening, non-linear, seemingly endless recoveries. Almost every post on the Facebook support group for COVID-19 survivors is met with words of encouragement and solidarity, and others confirming they have experienced the same thing, which is a small comfort medically and an unquantifiable comfort emotionally.
Because as symptoms wear on people physically, they are also wearing on people emotionally and mentally. There’s a psychological strain in feeling sick and not like yourself for weeks on end, and there’s a mental weight that’s hard to carry in feeling as though your body betrayed you. Lowenstein reports that “Almost all [in her support group] are experiencing mental health problems, including severe anxiety, panic attacks and depression, as they struggle to understand what’s next for them.”
For people on ventilators, the recovery is unsurprisingly even more complicated. The use of a ventilator in itself signifies significant disease and may result in scarring of the lungs and reduced lung function, either as part of their short-term recovery or long term. That’s all separate from the potential PTSD patients may have to grapple with. David Williams, 54, spent eight days on a ventilator and is now home with his wife, but still requires the use of oxygen, a walker, and is struggling with his cognition–remembering passwords he’s used for years and finding the words he needs to complete full sentences is difficult.
With recovery being a murky benchmark, how can anyone know whether they are still contagious, whether they’ve reached the kind of recovery that makes it safe to stop self-isolating? The truth is we don’t yet know. Aaron Carroll, a professor of medicine at Indiana University, told NPR, “We still don’t have enough data to really know how long people are infectious.” Which is why everyone—recovered or not—should continue practicing social distancing and abiding by CDC guidelines.
Saying COVID-19 is a mystery is an understatement. It seems as if an answer to one question brings a dozen new questions. And without a doubt, one of the questions that will remain with us for a long while will be with respect to recovery and long-term effects of this disease. Because this virus is simply too new, and the whole world will have to wait and see.
But maybe, for the immediate future, answers can be as important as simple connection. Social media posts and anecdotes in support groups may not be scientific answers, but they may be able to give anyone undertaking the long and crooked road to recovery a little hope, and a way to know they aren’t alone.