Three previously healthy people in their 30s are still dealing with symptoms months after being infected with COVID-19. As Australia rolls out its vaccination program, sufferers are calling for more recognition of this emerging condition.
“It’s no life,” says Sarah Hughes.
“Being sick and having pain every day at the age of 34, when this should be the prime of my life, is just very hard to deal with. And I think that’s probably what causes me the most depression out of all of this.”
It has been eight months since Sarah’s role as a senior nurse in aged care brought her into the thick of Melbourne’s second wave of COVID-19.
She fell ill with COVID-19 in July and has not been able to work — or even cook for herself — since.
She has suffered chronic pain, chronic fatigue, PTSD, blood clots in her lungs and a mini-stroke. She has been in and out of hospital a dozen times — at one point spending five days in ICU. On top of all that, she acquired bacterial pneumonia during a hospital stay.
Where she once administered medications to her patients, she now takes an array of tablets to get her through the first moments of her own day.
She says she feels like the Tin Man from The Wizard of Oz.
“He has to oil his joints. That’s how I feel before I take my medications in the morning. I feel achy and creaky and sore.
“I’m on a vast range of medication that has unfortunately led to a few different side effects. One of those has been my teeth breaking down.
“I have a coffee and just lay in bed for an hour with a heat pack. And starting my day might be having a shower … sitting on the couch and perhaps doing a jigsaw puzzle, if I’ve got the mental energy for it.
“That compared to my life previously are chalk and cheese.”
She says before she had COVID, she had no underlying health conditions except well-controlled asthma. She led a busy life in her dream job and spent time with girlfriends most nights of the week.
“I’ve had friends who have almost dropped off the face of the planet because they’re not sure how to deal with me,” she says.
“It’s almost like they’re dealing with some form of grief or noticing the difference in me, because I was so active before.
“I was always at work or going out and socialising. They just said I’m a completely different Sarah. And they found that really hard.”
The day we visit Sarah she tells us it’s taken her most of the morning to get ready for our arrival, taking rest breaks in between having a shower and doing her make-up.
During our interview there are a number of occasions where Sarah trails off, losing her train of thought. She calls this “brain fog” and it’s another commonly reported symptom among COVID longhaulers.
She has relied on the support of family for the last eight months, and says without them, she would have needed carers to come in and help clean her house, cook and look after her.
“I used to run meetings and training sessions and things like that. There’s no way I could do my job, because even sitting here with you now, in my own house, in my comfortable surroundings, I still am forgetting what we were talking about,” she says.
“It’s the hardest part to think [this] would be in my life for the rest of my life.”
Sarah is calling for greater recognition within the medical community of long COVID as a legitimate condition.
“When I was in a mental health centre there was a doctor there, actually two doctors there, that seemed to not think it was a real thing. That seemed to think that it was all in my head. The pain wasn’t really there. When actually, it really is, and this is a real issue,” she says.
“And that’s very hurtful.”
‘Even asymptomatic people are experiencing long COVID’
Researchers at the Walter and Eliza Hall Institute (WEHI) in Melbourne are studying immunity in recovered COVID-19 patients.
Data provided exclusively to 7.30 from the COVID Profile study found a third of the 77 participants with COVID had “long COVID” — symptoms experienced weeks or months after the initial illness. A study published in The Lancet medical journal found 76 per cent of 1,733 patients surveyed had at least one of a range of possible symptoms six months on.
Vanessa Bryant, who is leading the project at WEHI said the most common reported symptoms were lethargy, loss of smell and taste and shortness of breath.
“So from our study, we found that 34 per cent of participants, of volunteers who have recovered from COVID, are actually still experiencing symptoms of long COVID in our study. So that’s fairly significant. It’s in line with global reports. But as we said, it was a surprise to us when we first started,” she said.
“It’s now pretty well established that this is a true phenomenon.”
She said young, healthy patients who didn’t suffer from a severe case of the virus could still be susceptible to the persistent symptoms of long COVID.
“Even asymptomatic people who had relatively mild disease are also experiencing long COVID,” she told 7.30. The WEHI study is still open to new participants.
This is the emerging public health epidemic of long COVID, with trailing implications for workforce participation and demand on medical and disability services.
‘Pain in my chest every single day’
Jason Garrick, 34, is in his element playing rugby. But running up and down the field has been much more challenging since he had COVID-19.
“I got COVID early on in the pandemic,” he says.
“I travelled to London on the ninth of March for a very dear friend’s wedding.
“Like many Australians, we didn’t really take it that seriously at that time, other than it was something that was happening somewhere in the world, and everything would be OK.”
Initially asymptomatic, it took some time for him to show signs of the virus.
“I lost my sense of taste and smell. The cough was relentless … it was very hard to breathe,” he says.
“There were times where I would need to move and one particular day … I went to pick up my phone to see what time it was. And I couldn’t lift my arm. I then couldn’t lift my head. And I had no energy and no ability to move.”
But it’s the long-term symptoms that have the young Rockhampton lawyer puzzled.
He says after officially recovering from COVID-19 he continued to “have a sense of heaviness” in his chest, “bouts of fatigue, those kinds of things”.
“I went back to the doctor, went back to my GP and talked to him about what I was experiencing. My GP then told me about a number of other examples, [people in] different regions, testing positive to different kinds of health issues that were never thought about at the time,” he says.
“I was diagnosed with having ongoing complications with it but with no explanation.”
He and his GP spent six months monitoring his symptoms.
“I always have a dull pain in my chest every single day. And I have, since I recovered from COVID, I have never stopped having chest pain,” he says.
“Whenever I try to push my body to do something that would normally involve some high-intensity interval training or running, anything that’s high cardiovascular effort, I start to feel it in my chest, and it gets progressively worse.
“When I do something like rugby training, something that’s very important to me … I feel this pain and this tightness across the top band of my chest, exactly where I felt the heaviness, where I felt the pain, while I was sick.”
In October 2020, he went through a series of tests on his lungs and heart. They found nothing of note.
“The good news is everything was fine. But there is still … no explanation as to why I still have significant tightness around my chest.”
Searching for answers
Associate Professor Lou Irving, a respiratory physician at the Royal Melbourne Hospital, is hoping to help patients like Jason and Sarah get some answers.
He runs a post-COVID clinic where a small group of doctors have regular follow-up appointments with patients who suffer ongoing disease.
Many report heart palpitations, breathlessness and fatigue. A few have unusual neurological symptoms such as disruption of taste and smell. The focus is on helping them deal with symptoms.
Dr Irving’s multidisciplinary team includes three GPs, a neurologist, exercise physiologist, sleep physician and psychiatrist, with other specialists brought in as needed.
“It’s not always possible to tell whether this is a new, specific manifestation of viral infection or something in the background exacerbated by viral infection,” Dr Irving says.
“I was conscious that we wanted to avoid making specific diagnoses … that was informed by experience with previous viral epidemics and pandemics.
“For example, encephalitis lethargica that seemed to follow the pandemic of influenza was one of the most baffling diseases of the 20th century and was never fully characterised.
“There are certainly features that we’re seeing that we’ve not seen with previous viral infections, such as isolated neurological findings. Pain in one arm, for example, change in smell, a change in memory and thinking.
“But we’re also seeing symptoms that kind of follow any infection, such as fatigue, such as lack of energy, sleep disturbance, mood disturbance.”
‘A psychological impact as well’
One of Dr Irving’s patients is ICU nurse Brad Gebbie, 32.
He contracted COVID-19 at the end of July 2020, and both his wife and two-year-old daughter later swabbed positive too.
While those two did not experience symptoms beyond the initial period of infection, Brad experienced an ongoing sore throat, headaches, breathlessness, heart palpitations and fatigue.
“So my COVID was quite mild. There was never a time where I kind of felt like I was on my deathbed, as such,” Brad says.
“I just felt really, really unwell within myself, just didn’t feel very motivated to do anything.
“Compared to what I was seeing at work where we had young and old coming in with COVID — most of those ended up on life support — it was obviously nowhere near that stage.”
After a staged return to work with lighter duties, he began to notice he physically wasn’t back to where he had been.
“It wasn’t until around December that I became more aware of just doing simple things, like a bit of gardening at home, nothing too strenuous, [and] I was just short of breath,” he says.
“And there are times when I felt like I was having palpitations, as well. So that was kind of my trigger to think maybe I should have some follow-up after this virus.”
He says he has felt relieved to have access to Dr Irving’s clinic. And he’s been lucky. There are few specialist services for post-COVID patients, thanks largely to Australia’s success in containing the pandemic.
“There is still this ongoing fatigue, which does come in waves,” says Brad.
“A few weeks ago, there was a period of about three weeks where … I was falling asleep during the day, which I never did. And being home with young kids kind of makes you feel quite down because the kids want to play and you just don’t have the energy or just can’t be bothered playing with them.
“So it’s had a psychological impact as well.”
- Reporter: Nadia Daly
- Producer: Xanthe Kleinig
- Photography: Daniel Fermer and Colin Hertzog
- Digital production: Myles Wearring