Living with long COVID


So tired. Photo: via Flickr, CC BY 2.0

While the pandemic may seem over for some, ‘Long COVID’ is a reality for many Canberrans, resulting in physical illness, and social and professional isolation. 

Local long COVID sufferer Lauren was diagnosed with the condition in February 2022, and brain fog and fatigue have impacted her social and work life. She said it was difficult for others to understand her illness. “(There’s a) complete lack of understanding from my family … they don’t understand why I’m still sick,” Lauren said. Long COVID has meant she is no longer able to work full time. She has recently began a gradual return to her job just six hours a week and, while her workplace has been supportive, even these reduced hours are draining.  

Mark, another Canberra local, said it had affected all aspects of his life too. “I cannot exercise whereas previously I was an avid runner,” Mark said. “It’s hard for my wife and son, as they’re used to seeing me so active. I can no longer do cognitive tasks, like reading … even everyday tasks, such as cleaning, take far longer to complete.” 

As an emerging condition, the definition of long COVID still varies widely, and may include body-wide, debilitating symptoms such as brain fog, fatigue, heart palpitations, mood changes and more. Diagnosis can be a long and emotionally arduous process, and once diagnosed, treatments can be largely experimental and short lived. Misdiagnosis is also an issue.  

Deakin University Chair of Epidemiology Professor Catherine Bennett describes it as “a spectrum of a disease, and symptoms can combine or exist in isolation from each other”.

“A lot of symptoms actually present kind of in reverse – some people can develop a rash from long COVID, but a rash can also be caused by heart problems, which can be caused by long COVID. It can be really hard to diagnose a root cause of patient symptoms,” she said.   

Bennett hopes current studies can help develop a system of neurological and blood biomarkers, which in the future can be used to not only make a more definitive diagnosis, but also allow for more effective management strategies for long COVID patients.  

Ultimately, Bennet says the lived experiences of patients such as Lauren and Mark hold importance for the fight against long COVID.

“I do think it’s important to hear the person’s story,” she said. “It’s a really powerful thing … you really do need to hear lived experiences to understand how it is impacting people’s lives. We really need that to help us find the answers to how to manage long COVID.”