How long COVID turned the lives of 15 Australians upside down
“There are more things in heaven and earth … than are dreamt of in your philosophy.” — Shakespeare
There is not much being done to effectively support people with long COVID in Australia. I can’t magic research, money, media attention or education into existence. But, as I have long COVID myself, I can’t do absolutely nothing. So, I’m doing the only thing I know how to do, which is to observe and record.
This collection of true stories is my salute to Australians who are going through long COVID, and to their ME/CFS allies who have been at this advocacy work for decades.
Each story came out of an in-depth interview in July 2022 based on this questionnaire. Names have been changed for privacy reasons. Each storyteller had an opportunity to read a draft of their section to remove any identifiable information.
If you have long COVID and are struggling with lengthy concentration tasks, I recommend skipping to the section that most reflects your story and just reading that. All these stories are quite similar, so you don’t need to read the whole piece to extract value from it. (There is also a listen button above!)
Thank you to everyone who shared their story. You have made a meaningful impact to my recovery. I hope that through this project, you can help others too.
Contents
· Alice’s story
Alice, a social worker in her 40s, has two primary school kids from Melbourne with long COVID.
· Molly’s story
Molly, a 43-year-old teacher in regional Queensland, has long COVID. So does her 12-year-old daughter.
· Fiona’s story
Fiona, a 54-year-old senior public servant living in the ACT, has long COVID.
· Max’s story
Max is a 34-year-old customer experience manager from Melbourne with long COVID.
· Grace’s story
Grace, a 39-year-old checkout operator from regional NSW, has long COVID.
· Bridget and Mark’s story
Bridget and Mark are Sydney-based professionals in their 30s who both have long COVID.
· Marie’s story
Marie is a 55-year-old manager in Tasmania with long COVID.
· Catherine’s story
Catherine is a 40-year-old IT professional based in Sydney who has long COVID.
· Jessica’s story
Jessica is a previously healthy 27-year-old with long COVID.
· Charlotte’s story
Charlotte is a 46-year-old exercise physiologist based in Sydney who has long COVID
· Loretta’s story
Loretta is a 44-year-old teacher based in regional Victoria who has long COVID.
· Nicole’s story
Nicole is 35-year-old ordained minister in Victoria who has long COVID.
Alice’s story
Alice, a social worker in her 40s, has two primary school kids from Melbourne with long COVID.
Patrick and Henry are ordinary primary school kids from Melbourne who love Taekwondo, swimming, running and reading books.
“They were happy, healthy, normal, not a care in the world,” says their mother, Alice, a social worker in her 40s.
28 December 2021 was the day everything changed.
That was the day the two boys tested positive for COVID.
Patrick, aged seven, had mild COVID symptoms but Henry, aged nine, was hit quite badly. He had a raging fever. When he got so sick that he couldn’t walk to the bathroom, his parents took him to the emergency department.
Since then, the family has been living in a special kind of hell.
“We’ve pretty much run the gauntlet of every bizarre symptom that you could get,” says Alice.
In February 2022, around a month after catching COVID, Henry developed severe confusion and was hospitalised for three days.
“He couldn’t recognise his own name,” says Alice. “He would have dinner and then 10–15 minutes later he’d say, ‘What’s for dinner?’ And he would still have the plate on his lap.”
At the time Henry was hospitalised, he was suffering a range of symptoms including chest pain and system sensitivity.
Despite the severity of Henry’s condition, a doctor at the hospital told Alice that her son would benefit from returning to school, so he was not focused on his symptoms by spending all day at home.
Alice was told by a hospital doctor to send Henry to school and not pick him up if he was unwell. He was to rest in the sick bay and return to class after 20 minutes.
“I said to the doctor, ‘They can’t go to school. They can’t wear footwear. They can’t bathe. They can’t have noise or light. They can’t think. How are they going to learn?’,” says Alice.
Alice was told by the hospital that there was no point returning to the emergency department with Henry as there was nothing they could do for him.
Since then, Alice has taken her son to a different emergency department for chest pain, at which time an ECG was undertaken. She does not feel like she can return to the first hospital.
Her other son, Patrick, became “extremely irritable and aggressive and then he got depressed”, says Alice. For a seven-year-old who was normal beforehand, this was an extreme change in behaviour, she says.
Patrick was never sick enough to be rushed to hospital, but he was in excruciating pain. “He was saying he felt like he was dying most nights and that the bed and pillows were full of lumps,” says Alice. “He was screaming and writhing around in discomfort.”
“We slept — and still sleep — in bed with them every night because they won’t go back to their own beds,” says Alice.
Both children couldn’t wear shoes. “I figured out afterwards that it was from swelling in the feet,” says Alice.
“So basically, they walked around with no shoes on for months. And you get strange looks in the hospital. We’ve being told, ‘Perhaps it’s behavioural.’ I’m like, ‘No, it isn’t.’”
Patrick lost his taste and smell for weeks. “His food intake became really strange,” says Alice. “At one point, he would only eat a few berries for breakfast. That was it. Or a packet of dried seaweed. He couldn’t drink properly. He’d take a sip of water and hold it in his mouth and not swallow it.”
Both boys had extreme light, sound and temperature sensitivities and had to sit in darken rooms during the day. At night, Henry would say he “couldn’t stand” the noise of the crickets outside the window.
“They couldn’t bathe,” says Alice. “If we tried to get my nine-year-old in the bath, he would just feel sick from the temperature. He wouldn’t shower because the back of him was too cold when he was standing under the water.”
Henry was sensitive to pain. “He couldn’t get a band aid off without screaming and crying,” says Alice. It was the same with an ECG sticker. “He would take one off a day and scream and cry,” she says. By the end of the week, the stickers had burned his skin because they had been on for so long.
Both kids have fatigue. Henry couldn’t get off the couch or get dressed for weeks at a time. “We had to very slowly build him up with small daily activities,” says Alice. Patrick’s condition was milder but harder to manage in some ways. He would overdo it and then run out of steam.
Both kids had rashes, body aches, food intolerances and sleeping problems.
Patrick had itchy gums. “The GP was ringing every day checking in to see how the boys were. I was like, ‘What the hell is going on? His teeth are itchy!’,” Alice recalls.
Both kids have missed large chunks of school and can only tolerate around two hours of class on the handful of days when they can attend.
“It’s really hard to explain to teachers,” says Alice. “They understand fatigue because the kids get really tired and pale. But the cognitive challenges associated with long COVID are quite hard to understand. It’s very easy to just say, ‘Oh, they’ve just, you know, been a bit lazy, don’t want to read a book.’ But it’s not that at all.”
Over the past six months, the kids have continued to slowly improve. “I’m super grateful to have learned so much and to have not trusted the advice of some of the medical professionals,” says Alice. “What they were telling us to do was just wrong.”
Alice hasn’t been able to work much. “I tried to return to work last month,” she says. “I did two days a week and we got my in-laws to come over and help. But the problem is when the kids get home from whatever school, they’re exhausted, and it is too tiring to have visitors in the house.”
Her employer has been “incredible”, she says. “When I returned for those few weeks, the manager came down and said, ‘Even if you just come in and have a cup of tea and then you need to go home, that is absolutely fine. You just do what you need to do.’”
“I’m not working at the moment,” she says. “With school pickups and drop offs, I go up and down to the school several times a day. So, I can’t really do much more, and I’m burned out to be honest. After six months of 24/7 caring, I’m exhausted.”
Neither Henry nor Patrick are part of a long COVID study.
Molly’s story
Molly, a 43-year-old teacher in regional Queensland, has long COVID. So does her 12-year-old daughter.
Molly is a single mum in regional Queensland who teaches at a local school.
Before January 2022, her family was quite active and outdoorsy, spending days at the beach and by the pool.
“I’ve always been a health-conscious person who’s exercised,” she says. “Prior to this, I was quite fit. So, my resting heart rate would be in the 50s or 60s.”
On 8 January 2022, Molly caught COVID. She was double vaccinated and aged 43, so she didn’t think she had much to worry about.
Two weeks later, her heart rate was elevated to 116 (more than double its normal rate) and she found herself in emergency nervously waiting to see a doctor.
“There was something on my ECG and my blood showed up for clots,” she says. “So, I had a CT scan. They couldn’t see pulmonary embolisms, so I went home. They gave me a diazepam to reduce my heart rate. And I had to see a cardiologist.”
The next day, she couldn’t move her legs or open her eyes. She was whisked back to emergency. The hospital staff thought she had sepsis. “I got an IV drip, and then I felt fine,” she says. “Just like dehydration but my inflammation levels were high.”
For Molly, long COVID caused insomnia and constipation. It also caused such severe fatigue that she could only work half days.
“I pace myself and I have a rest during the day,” she says. “If I don’t, that’s when I get some more symptoms like headaches and ocular migraines. I’ve had my vision go blurry when I’m fatigued. I get a sore jaw and neck. If I don’t rest, I have a breathing difficulty or changes to my breathing. I can’t really explain what it is.”
Molly is worried about money. “I’m a single mother so, I’m the sole income in the family,” she says.
Molly’s 12-year-old daughter Madeline caught COVID on 2 January. Since then, she’s had a stomach upset, nausea and dizziness when standing, as well as flushed cheeks when exercising.
“It’s really hard to gauge with a 12-year-old,” says Molly. “Sometimes she says her limbs hurt. When she went to school, she would get headaches, especially with maths. So, I think that would be like a visual fatigue.”
The hardest thing about long COVID is “not knowing what’s happening to your body, not having that medical support,” says Molly. “There are no treatments.”
“Oh, and just the expense on it. You know, every time I go to the doctor, it’s between $100 and $140. Cardiologists are like $300. It costs a fortune.”
Doctors are cautious about trying new therapies, says Molly. “When you read all this stuff, and you go to the doctors and say, ‘Oh, can I try this?’ They’re a little bit hesitant. They’re like, ‘Oh, well, there’s no evidence for it.’ But it’s really hard to sit and wait when you don’t feel well, and you can’t get on with your life.”
Molly says long COVID has taken a toll on her mental health. “I’ve started seeing a psychologist and recently started taking antidepressants,” she says. “I’ve never been a person who’s had depression. I know you get depressed as your situation changes, but I felt like it was an automatic chemical change for me when I got COVID. I felt like I was automatically depressed.”
“It’s turned our entire lives upside down,” she says. “We’re just not doing any of the social activities we would ordinarily do. Emotionally, it’s been devastating for me. Just not having any of those answers. Not just for myself and my health, but also my daughter’s.”
Neither Molly nor Madeline is participating in a long COVID study, despite being open to the idea.
They have not had access to a specialised long COVID clinic.
Fiona’s story
Fiona, a 54-year-old senior public servant living in the ACT, has long COVID.
“By 2–3pm, I am useless,” says Fiona, a 54-year-old senior public servant living in the ACT.
Her job mostly involves reading, analysis and providing recommendations.
But, since she caught COVID on 20 March 2022, she’s had such extreme brain fog that she needs to carefully re-read everything that passes across her desk. “It gets jumbled,” she says. “And I forget things I knew like the back of my hand.”
“I have days I just can’t get out of bed,” she says. “My family worries. I’ve never been the fittest person, but I’ve never been an all-day in bed person. If I am in bed, they wander in every half hour or so to check on me.”
She hasn’t gone a day without Panadol or ibuprofen since getting COVID, “and it never kills the headache totally”, she says.
“I have memory issues where my adult sons finish sentences and fill in blanks for me,” she says.
“I get weird aches and pains that feel like I’ve been working out when I do nothing,” she says. “I have intermittent fevers, sinus issues, taste issues occasionally. I’ve also noticed singing along to my favourite songs, that I have reduced lung capacity and can no longer belt out Evanescence.”
Fiona has pre-existing diabetes, seasonal asthma and chronic sinusitis. When she caught COVID, she was triple vaccinated. Her COVID symptoms were moderate; her oxygen was low, but not low enough to land her in hospital.
She’s been isolating more since she got COVID “mostly because I don’t have the energy to go anywhere”, she says. “I occasionally leave the house, but usually wind up exhausted.”
Her employer has been “awesome”, she says. “I’m working from home until I can get into the long COVID clinic in Canberra, and at about 60–80% capacity. Boss says that’s still more than some people’s 100%. My managers are all very understanding.”
But she’s still worried about what comes next. “I am starting to wonder if I can continue being ‘full-time’,” Fiona says. She’s thinking about retiring at 55 now.
“I’m really scared and really tired of trying to put on a strong face for those around me,” she says.
“I feel like a waste of space, that I am letting my family down and my work mates. When I hear that there’s no real answers, while logically I get it, I wonder what the point of even trying is.
“I do get depressed when I hear the line, ‘This is all so new so no one knows how long it will last or how to treat it.’ While I get that, it’s still depressing.”
Fiona is waitlisted for a long COVID clinic.
She is not part of a long COVID trial. “I would happily be a guinea pig if it would help me or someone else,” she says.
Max’s story
Max is a 34-year-old customer experience manager from Melbourne with long COVID.
Max was very active before long COVID. “I’ve gone from like running 60 or 70 kilometres a week to not running for six months, basically,” he says.
The 34-year-old customer experience manager from Melbourne says he’s “one of the lucky ones” because he’s been able to work full-time.
He recently dropped down to four days because he wasn’t recovering and is now feeling a lot better. He’s currently using up his sick leave. “If I run out of leave, then it will be unpaid,” he says.
Max caught COVID on 2 January 2022 after two COVID shots. He had moderate COVID symptoms.
Long COVID for Max includes severe headaches, nausea, a change in his sense of smell, fatigue, nose bleeds, chest pains and a racing heart.
“It’s gone up and down,” he says. Each time he’s tried to get back to a normal routine, he’s gone backwards. He’s improving because he’s getting better at managing symptoms. “But the underlying issue is not improving in my view,” he says.
Long COVID has “taken away all my releases”, he says. “Like, the exercise is gone, the social elements are gone. You don’t have balance. It’s just work and Netflix on the couch. And when I’m up to it, walks. But none of those other elements that give you a well-rounded life.”
He’s had to fight to get doctors to investigate his symptoms.
“During my initial consultations there was no willingness to refer or treat,” he says. “It was kind of like, ‘You’ll get better, you’ll get better.’ And then when I didn’t get better, eventually I got a referral to the long COVID clinic. And they’ve got really limited numbers, so it takes you ages to get in.”
He’s only recently had an MRI to investigate his headaches and nausea. He only recently found out that he has liver disease.
“I’ve had to push things along,” he says. “The health professionals that I’ve been seeing don’t appear to have done much reading or professional development around long COVID.”
Doctors tend to fall back on treatments that have worked for other illnesses, such as graded exercise therapy, he says.
“That was not good,” he says. “The long COVID clinic built up how long my walks were and then tried to reintroduce jogging. And shit hit the fan at the first hurdle, and I went backwards.”
Max says there isn’t enough attention on long COVID as an outcome of COVID. “I’d just like to see some recognition that it exists,” he says.
There should be protections in place so that “others don’t have to suffer from the same thing,” he says. “I feel like a lot of people don’t understand what might happen off the back of an infection.”
“There needs to be more training for GPs and doctors on long COVID. And resources on long COVID should be shared across countries, including the US and UK, which have two years of experience,” Max says.
“A lot of the health professionals that have spoken to us don’t seem to be looking overseas for answers,” he says.
“It just feels really disjointed at the moment. I’m willing to be part of a trial. There’s nothing for me. I’d like to see money going into research to understand what’s happening and how we can treat it.”
Grace’s story
Grace, a 39-year-old checkout operator from regional NSW, has long COVID.
“My life is shit,” says Grace, a 39-year-old checkout operator from regional NSW who has long COVID.
“I stay home on my own all day, sleep, am in constant pain. I can barely walk. I have a walker I have borrowed. I use it to get around my house. My heartbeat races and then goes slow. I do not work. I don’t see anyone. I have never been more isolated and depressed in my whole life. Oh, and I have no money.”
Grace caught COVID on 1 May 2022 after three vaccinations. She had severe COVID symptoms and called an ambulance but didn’t go to hospital. She has pre-existing Crohn’s disease and depression.
She hasn’t had a fourth COVID vaccine: “I am scared it will make me worse,” she says.
She had to retire from her role as secretary of the Lion’s Club because of cognitive issues.
“I cannot even send an email without it stressing me out and taking all day to send it,” she says.
“Losing my independence has been the hardest part. The only silver lining has been chatting with a few people on Facebook who also have long COVID,” she says.
“I see my doctor every week, he runs test after test and has found nothing that would cause all this crap,” she says. “He is still yet to tell me whether it’s long COVID I have. He says it is more likely than not but there is no test to say that is what it is.”
Grace says doctors “need more education on long COVID and they need a test to confirm long COVID is real”.
“This is the worst thing that has ever happened to me,” she says.
Grace is not part of a long COVID trial. She has not been accepted into a long COVID clinic.
Bridget and Mark’s story
Bridget and Mark are Sydney-based professionals in their 30s who both have long COVID.
On his worst days, Mark will sit on the end of his bed trying to figure out how to arrange his limbs so that he can remove a shirt.
Sometimes, he’s so exhausted that he can’t sit up in bed to eat dinner; he lies on his side with a plate next to him on the bed.
Often, Mark starts to lose his balance late at night and can’t climb the stairs or brush his teeth without wobbling and crashing into things. It comes on quite suddenly around 9pm most nights.
Over the past year, Mark has spent at least half of each day lying in bed, often unable to do anything except play mindless games on his phone. He often can’t watch TV or read a book because the concentration required is too great. He can’t maintain long conversations with his partner, Bridget, because socialising drains his battery.
“I don’t think that people quite understand that having long COVID is like being run over by a truck,” he says. “I don’t have the energy to see my friends or family. I was off work for six months. Now, I can do 12 hours a week of work, but even that is pushing it. This is, by some margin, the worst thing that has ever happened to me.”
In the early months of long COVID, Bridget would ask Mark whether he was on 1% battery or 10% battery or 20% battery to get a sense of whether he had the mental energy to discuss anything.
But then they started to see a pattern. Mark would be cheerful and able to hold and conversation and go for a walk most mornings, but by the afternoon, he’d be flat on his back, often with a splitting headache, unable to concentrate on anything at all, unable to prepare food.
Now, they just use a binary description; either Mark is human, or he’s turned into a ‘swan’. This new language was adopted after Bridget realised that Mark’s severe deterioration every afternoon had the same tragic feeling as Swan Lake, the ballet where an evil sorcerer transforms Princess Odette into a swan every night.
“Most nights, the clinking of cutlery on plates is like daggers in both ears,” says Mark. “The doctors say my autonomic nervous system isn’t working properly. Every afternoon, I lose the ability to filter out extraneous light, movement and sound. Even the feeling of a bedsheet resting on my neck is distressing.”
One evening, around eight months into long COVID, Mark was so fatigued that he stopped being able to understand the English language following a high-stress conversation.
“Most symptoms are improving but it is absolutely glacial,” he says.
Mark doesn’t sugar-coat the details of his condition so his colleagues can understand that he’s doing the absolute best he can under the circumstances.
Bridget also has long covid but it’s not nearly as bad. She has been able to work a few hours each day, but she still hasn’t been able to do more than an hour-long walk all year.
“I get quite severe cold and flu symptoms from overdoing it, like congestion. Sometimes the symptoms only last an hour at a time,” she says. “And when I rest, they go away. Super weird.”
“Most days, I feel like I just got off a 24-hour flight,” she says. “I can still think and work, I just need to squint a bit to concentrate. But I’m getting better every month. It’s just very slow.”
She quit her full-time job earlier in the year because the job was not compatible with having long COVID and caring for a partner with severe long COVID, even after significant accommodations were made.
She is now self-employed and finds she can juggle everything much better. “When you have long COVID, it’s like you are allergic to stress. Your body cannot process it like it normally does,” she says.
Before long COVID, Bridget enjoyed kayaking, skiing, and rock climbing. Her partner, Mark used to regularly cycle 50 kilometres on weekends.
They are both Sydney-based professionals in their 30s who were otherwise healthy and were double vaccinated before they caught COVID.
When they were infected with COVID in late 2021, Bridget had moderate symptoms, and her partner had very severe symptoms but wasn’t hospitalised. Neither of them expected a ten-month hang over.
Mark is enrolled at a long COVID clinic. Bridget put her name on a list but never heard back.
“I’ve been to many GPs, and they’ve done all the tests to screen out other conditions,” she says. “Now, they just ask me if I still have long COVID symptoms. I say, ‘Yes’. They make a note in their computer. There is nothing else to do. I’ve stopped bothering to go the GP now.”
Neither Mark nor Bridget are part of a long COVID trial, even though both are quite keen to contribute.
Marie’s story
Marie is a 55-year-old manager in Tasmania with long COVID.
Marie’s job as a manager is demanding. Six weeks after catching COVID on 4 January 2022, she went back to work part-time.
“I really shouldn’t have because I was so unwell,” she says. “But I was worried about the team.”
Her attention, memory and speech were poor. “I don’t think I was making really great decisions,” she says.
She used up all her sick leave on a six-week break. “I’ve got no sick leave left. So, I feel like I’ve lost that safety net now,” she says.
Her employer was “extraordinary”, she says. “They’ve got somebody else doing my job because in the manager’s role, I have responsibilities for reasonably significant decision making that I can’t do at the moment,” she says.
Marie is a 55-year-old Tasmanian who was very fit before COVID. “I did a lot of bushwalking, often multiday walks with up to 25 kms in a day,” she says.
“I felt so angry with the government when I got COVID,” she says. “I felt like I was collateral damage. The Department of Health was not prepared for the level of demand when the borders opened.”
She had two vaccinations before catching COVID. Her COVID symptoms were severe but she wasn’t hospitalised.
Since then, Marie has counted 22 distinct long COVID symptoms, including: sore throat, hoarseness of voice, shortness of breath, chest pain, dizziness, problems with depth perception, language, cognition, and attention, leg pain, weakness in arms, weight loss, fatigue, exercise intolerance, rashes, nose bleeds and “huge, unexplained bruises” for several months.
Post-COVID, Marie also developed fluid around her heart.
“The symptoms that concern me most now are pain in my arms and legs, stomach pain, severe, weight loss,” she says. “I’m 14 kgs lighter today than I was the day before I got COVID and have trouble maintaining my weight.”
Anxiety is another unwelcome long COVID symptom for Marie. “I had impostor syndrome when I was younger, but I threw that away a long time ago,” she says. “And, since COVID, it’s almost like it’s hit with a vengeance. I just think it’s another form of anxiety.”
One doctor she saw made time to listen, which really helped. “They asked me everything and didn’t constrict me to a 20-minute appointment and genuinely listened,” she says.
But the system isn’t geared towards caring for people with long COVID, she says. “There are structural issues,” she says. “The limits around the time doctors can speak with people. They can’t deal with long COVID in a 15-minute consultation. You can’t even list all of your symptoms in this time.”
The Tasmanian government launched a long COVID clinic in September with funding of $400,000. “You’ve got to be curious about what $400,000 can pay for,” she says.
Marie is not participating in a study, but she would like to.
Catherine’s story
Catherine is a 40-year-old IT professional based in Sydney who has long COVID.
Catherine has worked at the same IT company for 14 years and is now a manager.
“I got sick of people saying, ‘How are you?’ I felt like a broken record,” she says.
“When I was just trying to communicate that I was having a bad day, people thought I was looking for sympathy. They’d say, ‘Okay, hope you feel better soon’. And move on to the next thing.”
Catherine asked her boss to communicate the effects that long COVID was having on her work to everybody, but her request was ignored.
“I work for a very big, Australia-wide company,” she says. “I am very surprised that they have done nothing.”
To address this issue, Catherine uses her status on Slack to communicate what type of day she’s having. “If people message me, it says ‘long COVID day’,” she says. “And so, people know that I am struggling, and I will not be as quick.”
She’s been working full time from home in Sydney, but Catherine says people’s expectations of her remained the same regardless of how severe her long COVID symptoms were day-to-day.
Catherine’s brain fog made it difficult for her to concentrate at work. “My brain jumbles,” she says.
“The cognitive side of it was major. My ability to talk and articulate sentences. Some days that is just next to impossible.”
Despite a long list of long COVID symptoms, Catherine still catches up with her friends at the pub regularly. When she first told her friends about her long COVID symptoms, some of them laughed at her and said it was all in her head.
“Because my head wasn’t right, I ended up getting so frustrated, one time I actually threw drinks on them,” she says. “’I’m worried I’m going to lose my job and you’re laughing?’”
These friends changed their tune once everyone started getting COVID, she says. “They started freaking out that they might get long COVID,” Catherine says. “And they asked me a bunch questions. Once they recovered, they forgot all about it. And then other people have come back and apologised to me, because if they’ve seen coverage on the media about it. I don’t blame people in a sense. They don’t understand.”
Catherine is a 40-year-old with no pre-existing medical conditions. She had two vaccinations prior to the onset of long COVID symptoms.
She first experienced long COVID symptoms in late 2021, but she never actually had any COVID symptoms and doesn’t know when she contracted COVID.
“Initially, I thought it was some sort of vitamin deficiency, so I started taking supplements,” she says. “And after five weeks, I was seeing no change.” Further tests showed she might have a vitamin D deficiency, but eventually long COVID was diagnosed by her GP.
She’s had a range of symptoms, including insomnia, bloating, vomiting, diarrhoea, shortness of breath, recurring ear infections, complete loss of appetite, lightheaded, dizziness, blurred vision where she can’t even see the screen, an enhanced sense of smell and a sore neck.
On a bad day, Catherine has 20% of her normal energy levels. On a good day, it’s 80%. “I’ve forgotten what 100% feels like,” she says.
“I’ve had zero advice from a GP,” she says. “It’s just me guessing as I go along.”
Catherine was referred to a specialised long COVID clinic months ago but has heard nothing back.
She is not part of a long COVID study.
Jessica’s story
Jessica is a previously healthy 27-year-old with long COVID.
Jessica has a theory that people just don’t want to believe that a healthy, double-vaccinated 27-year-old like herself could be flattened by long COVID.
“There’s a cognitive bias people have, which is that they choose not to believe and accept things that seem too scary to be true,” she says.
“I went from someone who was fit and active and productive to someone who is disabled and in pain,” she says.
“I was completely healthy,” she says “I had a very mild COVID infection in late 2021. I wasn’t hospitalised, there was absolutely nothing that could predispose me or forewarn me that this would happen.
“And I think that’s a huge misconception. People are looking for an excuse as to why I might have gotten long COVID. They’re like, ‘Oh, you weren’t vaccinated? Right?’ And I’m like, ‘No, no, I was.’ ‘You were hospitalised, right?’ ‘No, I wasn’t.’ ‘But did you have diabetes?’ ‘No.’
Jessica has “crippling fatigue”, tachycardia (a racing heart), POTS (a dysfunction where your heart rate increases when you stand up), gastrointestinal symptoms, light sensitivity and motion sickness from looking at screens.
“If I scroll too fast on my phone or on my laptop, it gives me the sense of motion sickness, which is a great development,” Jessica, a data analyst from Sydney, says.
She has symptoms normally associated with the onset of a flu, like body aches and headaches.
“With all of these symptoms, you have to experience them to believe them,” she says.
“The fatigue is by far the most debilitating because everything we do takes energy, whether it’s work, socialising, exercising, doing housework. All of those activities take energy, and I find that my energy budget has gone from 100, to about 30. So, I really can’t do even close to what I used to be able to do.”
“And it’s had a devastating impact on every aspect of my life. A lot of things are just off limits now. Like I haven’t exercised since December last year. I used to be at the gym every day. I used to bike to work. I was weightlifting. Like I was a really active person.”
“It’s one of the many things that I’ve lost. The ability to go out and exercise and enjoy my body. I haven’t had a sense of well-being and, and health and energy in such a long time. I miss that the most.”
Her employer has been understanding, allowing her to be less productive and have decreased responsibilities.
“They have been accommodating of my need to take sick leave at random times,” she says. “I’m very lucky. But I also think that this is maybe not sustainable. At some point, I’ll have to go part time.”
Her mental health has been affected because she is in pain and exhausted all the time, she says.
“I also fear for the future. I’m not sure if I’ll be able to continue working. And I don’t know how long I’m going to be sick for. That could be forever.”
“I’m up and down. I’m not improving. If I was gradually improving, fine, I can be patient. But I’m not. And that’s scary.”
People ask her whether she is improving every few weeks and “they expect me to say yes”, she says. And when she answers ‘no’, people say, “‘Oh, you’ve been sick for so long now’. They are kind of like, ‘Oh, aren’t you done with this?’”
“I feel this is huge disconnect,” she says.
Jessica says she’s spent thousands of dollars on supplements and “all kinds of things that I wouldn’t have dreamed of purchasing before, but it’s just the sheer desperation”.
She went to a long COVID clinic and found it somewhat underwhelming. “The main therapy they offered me was a dietitian, occupational therapist, they also have a social worker and a psychologist,” she says. “And it’s not medical treatment at all. It’s a rehabilitation that’s not focused on treating the underlying cause of long COVID. And I find that really depressing, because I don’t need an occupational therapist, I need treatment.”
Jessica says she would love to be in a study because “if there’s a problem, I want to help find the solution”. But she hasn’t been able to get herself into one.
“Every other problem I’ve had in life, I’ve been able to tackle by myself, or maybe with the help of my friends and family. But this one, I’m powerless. My family is powerless,” she says.
Charlotte’s story
Charlotte is a 46-year-old exercise physiologist based in Sydney who has long COVID.
Some days, Charlotte can “go for a coffee, no worries”. On other days, she can’t make it up the stairs from her bedroom to the main room without passing out.
One day, following a period of being more active, Charlotte stood up from a chair and her legs “stopped working”.
Some days, she can’t concentrate enough to drive.
“I have had a few incidents recently — in fact, yesterday was one of them — where I do really weird things in the car,” she says.
She was at a traffic light and was just about to take off when she pressed the stop button and turned her car off. “And I just don’t know why I did it,” she says.
“I’ve driven to places knowing why I’ve driven there,” she says.
One day, she was completely unable to figure out how to change the radio station in the car. “I was looking at it. Couldn’t figure it out. Like it was a button,” she says.
Similar awkward moments happen at home. “I couldn’t quite remember some of the process of how to make a coffee, which is something I do every morning,” she says.
“It has been quite embarrassing, too, because it’s a struggle to construct sentences,” she says. Sometimes she’ll say something strange and try to correct herself, which “makes the sentence even weirder and then I get really embarrassed and frustrated”.
Charlotte, a 46-year-old exercise physiologist based in Sydney, says this makes work “really hard” because her job involves a lot of interaction and conversation.
At night, she has difficulty swallowing, which wakes her up.
Charlotte caught COVID on 26 December 2021 after having two COVID vaccines and was severely ill for about two weeks.
She went back to work initially but “that was probably my biggest downfall”, she says. “I struggled horrendously, went to half days until I actually just collapsed at work.” Now, she’s doing three to four hour a week from home. She used to do 35 hours a week.
She’s worried about getting more COVID shots. “Like what will it do to me? I had bad reactions for both my vaccinations. If I’ve got long COVID, what might that do? My GP wants me to I’m still thinking about it. But at this stage, I don’t want to,” she says.
Long COVID has been devastating for Charlotte. “I’ve completely lost my whole identity because I’m an exercise physiologist,” she says. “So, my job is very difficult to do. All my hobbies involve physical activity. So, I play soccer. I run, kayak, I do kickboxing, I hike. So, I can’t do any of that.”
“I have a great GP, but she hasn’t been amazing with this, to be honest,” says Charlotte. “She’s tried. She admits she’s a little bit in the dark.”
Charlotte says there was a tendency by her GP to focus on the psychological elements, like depression, rather than try to explain the neurological symptoms.
“Like I had restless leg syndrome all day, every day for weeks, and it was almost unbearable,” she says. “And I still get it but now. They just feel weird. But she just dismissed it. Completely and utterly dismissed it. So, that was disappointing. I’m like, ‘Come on. It’s 2022. This has been around for two years now.’”
Charlotte has received some specialised care at a long COVID outpatient program.
She isn’t part of a long COVID study.
Loretta’s story
Loretta is a 44-year-old teacher based in regional Victoria who has long COVID.
“Even though my ongoing symptoms are relatively mild, it frustrates me that I have been totally dismissed by my doctor,” says Loretta, a 44-year-old teacher based in regional Victoria.
Her long COVID symptoms include an eye twitch, a tingling in her hands and feet, fatigue, and a high heartbeat. “100 beats per minute is normal now,” she says.
Her doctors haven’t been very proactive about running tests, she says.
Loretta caught COVID in May 2022 after three vaccines. She was quite sick and went to the emergency department three times when she couldn’t breathe properly.
Loretta has a pre-existing medical condition that affects her voice, and asthma.
She has been able to return to work full-time. The kids in her class question her mask-wearing habit. She opens the windows and uses an air purifier too.
It’s hard to get back to the gym and her legs ache after doing a walk, which was frustrating.
Having long COVID is isolating. “I don’t go out much,” she says.
People have told her to just stop thinking about it and “get over it” but her partner has been supportive.
She’s refused to get the fourth COVID vaccine because the third shot was associated with shingles, which keeps coming back.
Loretta isn’t part of a long COVID study.
Nicole’s story
Nicole is 35-year-old an ordained minister in Victoria who has long COVID.
Nicole was let go from her casual job as an ordained minister in Victoria after getting long COVID. She doesn’t blame her employer; she simply couldn’t perform her normal duties officiating weddings, funerals, and church services.
“It was disappointing. I guess I understand it too,” she says. “Because you can’t just leave people hanging. Not knowing an end date makes it complex for workplaces to know when to fill a position.”
Nicole is a 35-year-old who was double vaccinated before catching COVID on 6 January 2022. Before getting COVID, she had asthma but was otherwise healthy. The acute infection made her quite sick with chest tightness, breathlessness, and tachycardia but she didn’t go to hospital.
Since then, she’s experienced pericarditis (swelling of the tissue around the heart), dizziness, lethargy and exhaustion, digestive issues, throwing up, chest issues and numbness in her forehead — and she’s been diagnosed with long COVID by a doctor.
The brain fog is quite disorientating. “I was driving home about a month ago from the shops and couldn’t recognise my driveway,” she says. “I had to actually stop and look at the numbers to make sure I was driving into the right place.”
She’s been getting better “incredibly slowly” and “it’s very much a roller coaster”, she says. “My husband said it’s like three steps forward and two steps back.”
Nicole says long COVID is “very isolating” socially as she’s not working and “people have taken a step back, partly because they don’t know what to say or do and partly because they don’t want to exhaust me”.
She is grateful for the compassion of her “beautiful” doctors. “It’s just frustrating, and probably frustrating for them to not have the answers,” she says.
Nicole thought about trying to join a study for long COVID in Melbourne but “I’d have to drive a long way”, she says.
She finds the silver linings where she can. “I try to find the little moments where gratitude or joy or beauty are around, so driving five minutes to the beach to watch the sunset is really important,” she says.
As of October 2022, the Australian Long COVID Community Facebook group had over 2,900 members and the ME/CFS Australia Community Facebook group had over 5,600 members.
I would like to acknowledge the decades of effort that people with ME/CFS have put into advocacy and education. While this story focuses on long COVID, there are many people with ME/CFS who have been experiencing the same kinds of health problems with little support for a long time.
This project was made possible by the people who volunteered their time to make it happen, including the interviewees, my family and friends who stepped in as editors when I couldn’t find a publisher and many stakeholders who offered support and advice during this four-month project. Thank you!
If this story affected you in some way, or you would like to share your story with me, you can reach me at: business.frogsandstars@gmail.com
