The Road Back Home: Coping with post-COVID’s long shadow
Two years into the pandemic, most of us have had a brush with COVID-19, whether we’ve contracted it ourselves or know someone who has.
For Dawn Ireland, the virus has been a constant companion. At the start of 2020, she hopped a flight from London and arrived home with a set of flu-like symptoms. Then, just as she thought she was getting better, she describes going from “healthy” to “off-the-charts not myself immediately.” The difference, if you’re looking at Dawn in photos, is between the person with a glowing smile posing in front of a beautiful rainbow, and the person lying sick in a hospital room.
“I was tested for everything, and for six months I went back and forth with my primary care doctor,” she said. “We kept finding issues like rapid weight change, fatigue, and brain fog. No one knew what to do with me, and it felt like my body was attacking itself.”
Though the average recovery time for COVID-19 is two weeks, studies show that for many patients—between 20-30%—the effects of the disease can last much longer—anywhere from 30 days to six months, according to a report from the NCBI.
This lingering condition goes by a few names: post-acute sequelae of COVID-19, post-COVID, or long COVID. The Center for Disease Control (CDC) defines post-COVID as a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus. They include:
- Difficulty breathing
- Symptoms that get worse after physical or mental activities
- Difficulty thinking or concentrating
- Chest or stomach pain
- Heart palpitations
- Joint or muscle pain
- Pins-and-needles feeling
- Sleep problems
- Mood changes
- Change in smell or taste
- Changes in menstrual period cycles
Post-COVID symptoms can be caused by anything from viral damage to specific organs like the lungs, heart or kidneys, to an autoimmune response. (One study published in the BMJ found that roughly half of 29 hospitalized COVID-19 patients emerged from their ICU stay with autoantibodies, which are antibodies that attack a patient’s own tissues or organs.)
Dr. Roberta Capp, Vice President of Clinical Operations and Innovations and Chief Medical Officer at Blue Cross and Blue Shield of North Carolina (Blue Cross NC), said part of the trickiness with diagnosing long COVID is how differently it presents in each patient. “The post-COVID symptoms are so broad, it can be other conditions creating heart problems, breathing problems, neurological problems. That’s why we want to correlate those symptoms.”
For patients who are still struggling with their health after two weeks, the first thing to do, she said, is to “see your PCP to get an evaluation to determine the next step, whether that’s testing, or a referral to infectious disease specialist.”
“We also have nurse case managers who can coordinate care, help members find a PCP if they don’t have one, and provide a review of member benefits.”
For Dawn, it has been the combined support of an attentive and proactive PCP and a dedicated nurse case manager that has helped her start making her way back to the person she was before.
“The nurse assigned to me helped so much. She checked in on me and helped me get a referral to an infectious disease specialist. She even sent me a face masks and an OTC card so I could pick up some vitamins and other necessities. I was shocked,” she said. “Blue Cross NC stepped up to the plate to help me and it felt like they cared about me as a person.”
Her advice to others coping with post-COVID: “You are not alone, and you’re not crazy. The medical world is still struggling to figure out what is going on with us. Don’t give up, things will catch up. Just hold on.”
The post-COVID road may be long, but for patients like Dawn, there’s hope for a rainbow around the bend.