Australia

Coronavirus 'long-haulers' are coming together in communities online in search of answers

Joanna Halls has been unwell for seven weeks and has been connecting with others online. Source: Long Covid Support Group

For two-time Australian Olympian Joanna Halls, being active was always a big part of her identity. But seven weeks after contracting COVID-19, the former fencer says she’s still struggling talk or walk quickly.

Vomiting, bleeding gums, headaches, memory loss, fatigue, and shortness of breath. On the surface, these symptoms would seem completely unrelated, but they’re exactly what two-time Olympian Joanna Halls has experienced since she contracted COVID-19 seven weeks ago.

The 46-year-old retired from fencing four years earlier, after competing at the 2000 and 2008 Olympics, but has remained physically active and continued working as a coach.

Now, weeks after contracting the virus on 18 July, she struggles to talk without breaking into coughing fits, says she can only manage one big conversation per day, and can’t walk quickly, let alone run.

“I used to be so strong,” she told SBS News. “Now I’m like an old lady in the head because I can't concentrate sometimes, and get confused, disoriented and irritable, and when I got out for a walk I’m frail and weak.”

Joanna Halls (left) at the 2008 Beijing Olympic Games.
Joanna Halls (left) at the 2008 Beijing Olympic Games.
Getty Images

Ms Halls, who contracted the virus as a frontline worker in Melbourne, is one of the thousands of COVID-19 patients whose symptoms go beyond the “textbook” experience.

Because she was fit and healthy, she said thought she would be able to get over the virus and be back to work within weeks.

“A lot of people think that either you have it mildly and you get better within a fortnight and it is a bit like flu, or you have it badly and you go to hospital and it’s really extreme,” she said. “Many people don't understand that there’s a big middle ground and it can be like a chronic health condition, and that’s really scary.”

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In the wake of the pandemic, social media groups created by self-described coronavirus “long-haulers” have sprung up, dedicated to spreading awareness of what they call “Long COVID” while governments and medical workers grappled with growing death tolls.

Beyond providing a place for suffers to connect, the groups have also been crucial for helping with research and advocating for greater awareness of the long-term impacts of the virus. Those behind the groups are demanding rehab, research and recognition for people with ongoing issues. 

One of the largest of the groups, the Long COVID Support Group, has more than 20,000 members from across the world on its Facebook page, including a moderator in Antarctica. Inside, sufferers of 'Long COVID' share the unusual symptoms they’re experiencing; rashes, cataracts, skin discolouration, insomnia, to name a few - and some for more than six months. They also share links to resources, provide tips for coping, and offer support to each other. 

The group defines suffers of 'Long COVID' as anyone whose experience hasn’t followed the “textbook symptoms” or recovery time. The World Health Organisation advised in February that people with mild cases of coronavirus should usually recover within two weeks. 

Lesley MacNiven, a moderator of the Long COVID Support Group, said: “We need to have realistic timeframes … and not just rely on a message that says you’ll get if for two weeks and then you’ll recover or you’ll end up in hospital. There’s absolutely this third invisible group.”

The 52-year-old writer, who lives in Scotland, is still experiencing COVID-19 symptoms after contracting the virus more than six months ago. 

Lesley MacNiven, one of the moderators of the Long Covid Support Group
Lesley MacNiven suffered from post-coronavirus illness for six months.
Supplied

"It can be incredibly traumatic to be at home with an illness you don't understand and wake up in the middle of the night and your heart is doing some strange things that it's never done before," she said.

"There are significantly ill people not being supported because the resources cannot stretch as far as them, but also people just didn't know."

Ms Halls said one of the hardest parts of her illness has been convincing people she is still sick weeks after she contracting the virus. 

“There's an element where we get that the medical profession has a heck of a lot on their plate and are taking a while to catch up, but there's also a point at which it's 'ok, at what point is it our turn?'," Ms MacNiven added.

New research into 'Long COVID'

A 12-month Australian study is currently among the first in the world attempting to understand the long-term impacts of coronavirus, with preliminary findings expected to be released within weeks. 

The research, which is being run out of St Vincent’s Hospital in Sydney, is attempting to track patients' recovery physically and mentally. 

Professor Gregory Dore, a physician and researcher at the Kirby Institute who is working on the study, said his preliminary estimates suggest up to 20 per cent of people who are diagnosed with COVID-19 experience symptoms that last for a few months. 

“There’s a growing awareness that there is this group of people that weren’t hospitalised, that some people are calling ‘long-haulers’ or people with a post-COVID illness or syndrome, that had what many people might describe as mild acute COVID-19 but have ongoing deliberating symptoms three, four, or five months post the initial infection,” he said.

“It’s really quite important to look closely at this post-COVID illness, because when you have millions of people being infected … even if it’s only 10 per cent of people that have a post-COVID illness, that’s an enormous number of people.”

Dr Dore said many of the people suffering from ongoing illness were young people, often in their 30s and 40s, who were unable to return to work or their normal lifestyle due to fatigue, muscle ache, 'brain fog' and difficulty breathing.

“It’s a real mix of different symptoms ... we are trying to get to the bottom of what is causing them,” he said. “This virus can do weird things, it can not just affect the lungs, it can affect, and infect, other organs in the body.”

Being able to read the stories of people in the online groups whose severe symptoms have lasted months is “scary”, Ms Halls said but added that she was now better informed about her condition and able to support others in earlier stages of the illness.

"It is an immensely scary experience to think that something is happening to you that you don't understand," Ms MacNiven said. "If you connect with other people and find out that this is within the realms of a normal experience ... then it takes a huge amount of anxiety away."

People who are unwell are advised to contact the Healthdirect 24-hour health advice helpline on 1800 022 222 or their doctor. In an emergency call 000. 

People in Australia must stay at least 1.5 metres away from others. Check your state’s restrictions on gathering limits. If you are experiencing cold or flu symptoms, stay home and arrange a test by calling your doctor or contact the Coronavirus Health Information Hotline on 1800 020 080. News and information is available in 63 languages at sbs.com.au/coronavirus.

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