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This is the second in a four-part series looking at facets of the pandemic. Read part one here.

Yesterday US President Joe Biden announced that the “pandemic is over”, so it could be that the world is facing the tail end of the COVID-19 crisis. But for many the disease is far from gone.

Long COVID-19 is affecting millions around the world; about one in eight people face long-term symptoms ranging from the frustrating to the debilitating. 

This rings true for Karren Hill, becoming one of the first Australians to catch the virus in February 2020 while on a cruise in South America. Her long-term symptoms began shortly after her recovery on the ship and return to Australia, but more than two years later Hill, 59, says she’s still struggling. Before catching the virus she was physically active and healthy: “It’s really changed my life.”

After some sick leave she was retrenched from her banking job, and although she hopes to return to the workforce, she says she first needs to focus on getting well. 

Laundry list of long-COVID symptoms

Because long COVID can present with a huge range of symptoms, measuring the disease is difficult. There’s no framework or diagnostic tools to check for long COVID. Nor is there one definition. Importantly, there’s a difference between long COVID and trauma caused by COVID-19, such as organ damage or changes in the immune system. 

So far, the main long-COVID symptoms appear to be respiratory, including chest pain, shortness of breath, painful muscles, tingling extremities and hot and cold flashes. The most common neurological symptoms are fatigue, sleep abnormalities, headaches and loss of taste and smell.

Hill experienced most of these. She caught the Alpha strain while quarantined on the cruise and had relatively mild symptoms. Her partner, Glen, had more severe symptoms. But she caught long COVID. He didn’t. 

“Two days after completing hotel quarantine, I started to get severe symptoms,” she says, describing hair loss, gut issues, difficulties breathing, fatigue, random muscle aches and pains and a headache that lasted for seven weeks. 

“I had cognitive impairment,” she says. “I couldn’t read a page and understand it and I was exhausted — I couldn’t do anything.”

It scared her that doctors didn’t know what was wrong. She started to get better but in January 2021 her symptoms worsened. She developed tinnitus and memory problems and then, shortly after receiving her first dose of the Pfizer vaccine, postural orthostatic tachycardia syndrome, causing irregular heartbeats and her pulse to soar to 200 beats a minute when standing up. Hill says her doctor told her it was linked to the vaccine. In rare cases, mRNA vaccines have been linked to heart inflammation. 

Ongoing research has found women are more likely to experience long COVID than men. The Delta variant so far appears to have caused more long COVID cases, but Omicron-related disease may arise as time goes on. Vaccines reduce the risk of long COVID, but the risk of long COVID increases with the number of reinfections. 

Although international data on long COVID is growing, Hill believes it’s still poorly understood in Australia. She’s the administrator of an online community group for people with long COVID and says the number of members keeps growing.  

Data is slow to come

Professor Deborah Lupton at UNSW’s centre for social research in health says it’s not uncommon for those with long-COVID symptoms to be dismissed by their doctors. 

“People are finding that doctors aren’t acknowledging that there’s a problem … or saying there’s nothing they can do,” she says. The only treatment for long COVID is symptom management and there’s no effective treatment for fatigue syndromes. 

It means some sufferers search for help online and can become susceptible to misinformation and “miracle cures”.  

“COVID-19 has been described as a massive disabling event,” Lupton says. New data has shown nearly half of all JobSeeker recipients are unable to work full time because of sickness or disability, and she fears long COVID will lead to that number growing.

About 31,000 workers called in sick to work daily across June due to long COVID — affecting 12% of the Australian workforce. It’s estimated the economy lost 3 million working days in the first half of this year because of long COVID.

“There hasn’t been enough acknowledgment on the continuing effect of COVID on people,” Lupton says. “They haven’t felt supported; they’ve run out of sick leave and had to leave their jobs. [The health insurance industry] is going have to start reckoning with the implications.”

There is some progress. This month the Albanese government announced an inquiry into long COVID and repeated COVID infections. 

Hill hopes it will lead to greater recognition of the disease. In the meantime, she’ll keep doing everything she can to ease her symptoms. She sees a nutritionist for her gut health, has acupuncture to help with numbness and tingling, and does meditation and breathing exercises.

“My doctor … seems to think that given it’s over two years that maybe I just have to accept my health as is now,” she says. “I’m looking for every treatment option that I can find to help solve the problem.”