The term “long COVID” is a contraction of “long-term COVID illness.” This phrase and others like it, such as “long-haul COVID,” originated with patients directly affected by the syndrome as early as May 2020. The social media hashtag #LongCOVID arose in part to counter the idea that COVID-19 only has an acute phase and a recovered phase.
“It is interesting that, even now in 2022, it’s not really recognized by all as being a problem,” says Dr. Christy Bussey, medical lead for the QEII COVID-19 inpatient service at Nova Scotia Health.
This lack of understanding about what long COVID is, how it presents, and its long-term risks is especially problematic to those patients who experience it and are seeking care.
“They’re being told that they’re, quote unquote, recovered and they’re not really recovered,” she says. “There’s a difference between being recovered and being no longer infectious from your acute infection.”
Dr. Bussey describes long COVID as a constellation of symptoms that patients struggle with for weeks or months after their acute COVID infection. Some organizations, such as the Public Health Agency of Canada, refer to it as post COVID-19 condition. Other organizations, such as the World Health Organization and the Center for Disease Control, use different definitions and symptoms lists for the syndrome.
Long COVID may include both physical and psychological symptoms. It has been observed in both adults and children, and in COVID-19 patients ranging from those who required ICU care to those with mild or no acute symptoms at all. Some patients note that mental or physical over-exertion worsens their condition.
Nova Scotia Health’s My COVID Recovery website provides resources for Nova Scotians who are struggling with symptoms three months or longer after a COVID-19 infection. It currently lists in-depth descriptions and possible reasons for 18 symptoms. It also offers a symptom tracker tool, which may be helpful to Nova Scotians who develop COVID-19 and are at higher risk for developing long COVID.
“If I were a patient with those identified risk factors, I would be intentional around my own symptom monitoring,” says Dr. Bussey. “It may give me more confidence in seeking health care or follow-up with my health-care provider to be able to say, ‘I’m having these symptoms, I am in this category, do I have long COVID?’”
One aspect of long COVID that can be hard to understand is that its symptoms do not always directly relate to acute COVID-19 symptoms.
“Long COVID can be really anything from head to toe,” she says. A July 2021 article in The Lancet noted more than 203 symptoms in 10 organ systems.
The key message Dr. Bussey wants to share with Nova Scotians about long COVID is that the condition is real.
“While we as a society can’t continue to completely isolate ourselves from the world, I think we do have to be really thoughtful around intentionally reducing our repeated exposures to COVID and the risk of contracting it,” says Dr. Bussey, “because the only way to avoid long COVID is to not get COVID.”