A year ago, West Australian registered nurse Bronwyn Smith led an active and outgoing lifestyle, regularly taking her dog for 5km runs, volunteering with Rotary, and captaining her local footy team. Then, Long COVID struck.

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Initially, Bronwyn attributed her lingering joint and muscle pain and fatigue to job burnout from working in a busy surgical ward.

“I had the joint and muscle pain, but it never went away and just got progressively worse,” the 34-year-old recalls.

With the help of a “really supportive” GP, Bronwyn was eventually diagnosed with Long Covid, and rheumatoid arthritis, likely triggered by post-viral inflammation from COVID.

Bronwyn experienced a range of symptoms, including an unexplained soaring heart rate while showering.

“I hadn’t really connected the dots until I saw [my GP] and I just kept on saying ‘What’s going on? Why do I feel like this?’,” explains Bronwyn.

“Then the more I started to think about, it made sense, because nothing else was showing up in my blood work.”

Friends and family have been supportive, but she remains cautious about discussing Long COVID due to its lack of broad acceptance and associated stigma.

“You don’t just go around shouting it,” she concedes.

“Even at work, some people will say ‘Oh, we just need to get on with it and everyone just needs to get over it’. Then they realise that I’m standing there. It’s a bit awkward.”

Currently working in ICU, Bronwyn manages her symptoms with medications like methotrexate and a modified work schedule.

“I got to the point about six weeks ago where I had a total crash and I ended up in ED and was quite unwell and just couldn’t really do anything,” she reveals.

“That same week, I’d gone into my manager and said: ‘I just can’t do this. Something needs to change’. I’m now working eight-hour shifts only, and for two days, I’m not on the floor, and doing one day in the office, and one day auditing.”

About Long COVID

The Australian Government Department of Health states that while most people with COVID-19 recover within a few weeks, some develop long-term effects known as Long COVID. The condition can affect many body systems, with symptoms including extreme fatigue, shortness of breath, heart palpitations, joint and muscle pain, and cognitive difficulties.

Health experts are still learning about Long COVID, and there is no specific treatment yet.

A 2024 paper in Microbiology Australia describes Long COVID as a global health challenge requiring ongoing research to find effective treatments. Studies indicate that antivirals and COVID-19 vaccines can reduce the risk of developing Long COVID.

In June, the Albanese Government announced nearly $14.5 million in funding for research grants to better understand the impacts of Long COVID. The research will investigate its physical, social, mental, and emotional impacts, and include national trials to assess and fast-track therapies.

The impacts of Long COVID

Like Bronwyn, Tasmanian registered nurse Melissa Frankcomb is also living with the debilitating impacts of Long COVID and Long COVID-induced Postural Orthostatic Tachycardia Syndrome (POTS).

After she and her young family contracted COVID just before Easter in April 2022, Melissa was left depleted and has since been unable to return to work for the past two years.

“My initial symptoms were fairly mild,” she recalls.

“They were enough to make me feel really tired, a runny nose, and that thumping COVID headache, which most people are familiar with now. That was the initial infection period. After that, [our family] went on a two-week camping holiday, where I just felt tired the whole time. I was there in my body, but I wasn’t there in my head.”

Melissa experienced splitting migraines, heart palpitations, and debilitating fatigue, which left her unable to function normally.

“The most challenging thing initially was the debilitating fatigue. I couldn’t function. I couldn’t get off the couch, my body just wasn’t’ working, my brain wasn’t working.”

After undergoing numerous tests to rule out other conditions, she was initially diagnosed by her GP with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) due to lack of information about Long COVID at the time.

Her Long COVID symptoms include POTS, a poorly understood condition which causes a number of symptoms, like dizziness, heart palpitations, fatigue, migraines, cognitive impairment, weight loss, nausea, and vomiting. Some symptoms have improved with time, medications, physiotherapy, and natural remedies.

In the beginning, Melissa believed that she’d be back at work in two weeks. But after two years, she has had to accept that her body has changed.

“In my mind, recovery was just around the corner and life was going to be back to normal and everything was going to be fine,” she recalls.

“But after a while you just have to accept that things have changed, your body has changed and, essentially, you need to accept that you’ve got a disability.

“The emotions that come with that are very strong and they come in waves some days. You might be angry about it, because you think it’s unfair, and everyone else is living their life and I’m just a shadow of before. It changes your relationships. And obviously you’re not working, so there’s that loss of identity. Who am I if I’m not Melissa, who’s a nurse and an active mum who goes bike riding and bushwalking with the kids and runs around after sheep on the farm?”

Finding light at the end of the tunnel

In WA, Bronwyn takes each day as it comes, managing the unpredictable nature of Long COVID.

“The way it presents is just so different [for everyone],” she explains.

“I don’t look like a prime candidate for it. I’ve always been a really healthy person, a really fit and active person. Hearing other people’s experiences, it’s always different. A lot of the symptoms that you think are the general symptoms are not the ones I have. The fatigue is definitely there, but the joint pain and swelling and other issues have been the main thing for me. The scariest part is there’s really no answers as to whether there’s going to be a cure, or how to treat it, or what’s really causing it.”

She finds strength and perspective through her GP, online support groups, co-workers, and friends and family. Medications have helped her improve, but she remains uncertain about her future.

“In the last month, I feel like I’ve turned a corner going onto methotrexate, and who knows, I may be on this for life, but I really hope not. I really hope I can get back to where I was but I don’t know if that’s a possibility. I’m just glad I can get up in the morning and do what I want to do, and slowly get back to the things that I want to do.”

Melissa, too, is slowly improving. Her cognitive symptoms have improved, and she is learning to manage POTS/Cardiac Dysautonomia with medication and lifestyle changes, like sitting down to cook dinner while monitoring her heart rate.

She finds support through online groups, meditation, healthy eating, journalling, and allied health services.

Despite the challenges, she remains hopeful for the future.

“Essentially, I wake up and pray that it’s a good day. Three days of my week can be wiped out because of severe migraines. The rest [of the symptoms] just come in waves,” she says.

“I’m very fortunate that I’m not in bed seven days a week. I can go for short walks on a good day, and I’m so grateful for that. But there are people out there that were previously marathon runners who are now using walking frames and can barely walk 50 metres.

“My advice to people [experiencing long COVID] is that you’re not alone. It’s a hard road and I wouldn’t wish it upon anyone, but there is light at the end of the tunnel.”