The Burden: Kiwis with Long Covid speak out

While the rest of New Zealand tries to move on from the Covid-19 pandemic, tens of thousands of the “team of five million” have no choice but to remain behind. People with Long Covid – which is estimated to affect anywhere from 2 percent to 20 percent of all Covid-19 cases – find themselves suffering silently, invisibly, while the rest of the world strives to forget.
For a three-part series on Long Covid (part one can be found here), Newsroom spoke to four of the thousands of silent sufferers. These are their stories.
An hour into my Teams conversation with Renee Dingwall, I pause and say I’ve still got questions left, but I don’t want to tax her too much. Should we pick up another day or forge on?
“This is part of the maths that I’m doing. I would like to continue on. What that will cost me is my lunch. I’m just not going to have lunch because I’ll be too tired, I’ll do this interview and when I finish I will sleep until my kids come home,” she tells me. And that’s an improvement in her state.
“A year ago I could not make that decision. Because I would just be dead, you know? Whereas now I’m able to go, ‘I will put a little bit more energy into this thing and I will sacrifice energy for that later’. It’s minute though: being able to decide whether or not I have lunch is pretty much the only decision I can make these days.”
So we move on, albeit guiltily on my part.
Renee says she was living the dream in early 2022, before she came down with Covid-19. She was Palmerston North’s first Pasifika woman city councillor and was preparing for her re-election campaign after being re-selected by the Green Party. Her husband worked in community access radio, one daughter had left to go to uni, another was in high school and the youngest in primary school.
“Our whole lives were juggling schedules and working out who’s picking up the kids from school and who’s cooking dinner. It was total chaos and we were thriving. Everybody was doing stuff that they wanted to do and we felt like life was good.”
Then the Government removed the requirement to wear masks in schools in April, as cases fell from a March peak (though they were still above 10,000 a day). Within a couple of weeks, Renee’s high school-aged daughter fell ill. Soon, the rest of the family got it too.
Renee kept working from home, pushing through it, because the council was debating its annual budget. A week on, she was testing negative, so she went back to her daily life. She felt tired, fatigued even, and knew it was related to Covid-19 but figured it would get better with time.
“The more I did, the worse it was getting. It took me ages to work that out. I felt, surely I’ll get better. The rest of my family had bounced back. They were back at school, they were doing things.”
The point where she fully realised she wasn’t getting better was after delivering a keynote speech at the Pasifika Fusion Festival. Her husband carried her to the car after that and she slept for five days, then spent the rest of July on the couch.
“I just slept for an entire month. And by the end of that month, that was when I realised, I’m not getting better.”
Renee dropped out of the race and sought medical care, though she had to keep working until her term was up in October. At the time, her GP thought she had fibromyalgia – a chronic disorder that causes pain and fatigue. Finally, in November, she was formally diagnosed with fibromyalgia and Long Covid by the third medical professional she saw.
“It was at that point, six months after I caught Covid, that I learned that pushing through and working through was the worst thing you can do for Long Covid. The more I was pushing, the more backwards I was going,” she recalls.
By then, Renee found herself basically debilitated.
“That was the point at which I was no longer able to walk to the toilet. We’d bought some crutches and I tried to use that, but they ended up being too painful to use. We hired a wheelchair, but I wasn’t strong enough to push myself in the wheelchair. Family from around the country came and took turns looking after me.”
The full list of symptoms Renee has experienced goes well beyond that: extreme pain in her lower back which affects her ability to walk, bursitis (joint pain), fatigue, breathlessness, increased heart rate, sore throat, slurred speech, muscle pain, brain fog, sleep disturbances, sleep apnea, headaches, tinnitus, pins and needles, numbness, loss of mobility, and sensitivity to light and sound.
“I remember the early days, when I was in the wheelchair in the kitchen, and one of my daughters knocked a glass off the bench by accident. The glass smashed on the ground and I just jumped – and that knocked me out for a week. Like … how? That’s crazy.”
Renee has a tendency to laugh when recalling the most difficult or absurd moments of the past two-and-a-half years. It’s a coping mechanism, because what else can you do?
After we make the decision to continue with our conversation past the one-hour mark, we turn to mental health.
“Before Covid, I felt like I was on top of my game and that everything was finally starting to come right for my family. That first year, I cried all the time. Just all the time. It was quite hard coming to terms with everything that I’d lost,” she recalls.
“My life turned into lying on the couch in the living room with my commode chair next to me, so that I could slide off, do my business in a bucket, slide back on the couch and lie there for the day. My family would leave at eight o’clock and the curtains would be shut so that the neighbours couldn’t see me when I went toilet. I lived like that, lying next to my bucket, all day, every day, for months.”
The loss of simple but meaningful things is extra difficult to process.
“I used to be the family cake baker. I used to make desserts and stuff, that used to be a thing that gave me joy. The extent of my cooking now – in just the last four weeks I have learned how to cook scrambled eggs in the microwave. And that is so exhausting that I will only do it once a fortnight.”
This took a toll on Renee’s family life and her finances. Her household dropped from two incomes to one. They sold the house and moved in with her father-in-law to save money. Plus, their costs increased – special food, accessibility accommodations given her limited mobility and the price of repeatedly seeing GPs and specialists all added up.
Some of those specialists, however, have helped improve her quality of life. She now walks the dog with her kids and her husband once a fortnight – though still in her powered wheelchair. Her physio has helped her work through some of her mobility issues.
Renee’s goal this year was to shower every day. So far, she’s managed that pretty well. It may not sound like a lot, but it’s a major improvement from where she was.
“Yes, I’m getting better. But far out, do I have a way to go.”
If it weren’t for Long Covid, Lucy would be studying to be a doctor right now. Instead, she works as a teacher aid for 4.5 hours a week – she hopes to move it up to five hours soon, but doesn’t want to burn herself out. The rest of the time she rests.
Before she caught Covid-19, Lucy was at the height of her school career. She was starting Year 13, she was deputy head girl, she was in the choir and barbershop, and the youth group at her church. Perhaps most importantly, she played lots of sport – 10 training sessions a week.
“I was very, very busy. When I wasn’t busy with sports or arts or studying, I was hanging out with friends. I didn’t spend much time at home. That all changed,” she says.
Lucy’s experience of the acute Covid-19 infection in February 2022 was “a really bad cold”. She knew she needed to ease back into school and sports, but some less severe fatigue and shortness of breath stuck around long after she was technically recovered from the virus. Lucy’s sister had Covid-19 at the same time as her, but had a different experience of “recovery”.
“We were both just as sick but when we went back into things, I struggled more than she did. My breathing was bad. Sometimes I’d be training and I’d have to just stop when I’d get bad.”
About a month later, while playing sport, she collapsed and was sent to hospital.
“I pretty much couldn’t breathe at all, lost feeling in my limbs, was seizing, throwing up. After that, I got really sick again. That was another 10 days in bed.”
New symptoms popped up after that. I ask her what those were.
“Do you want the big long list?” she asks with a chuckle. “Fatigue is definitely a big thing. I got diagnosed with chronic fatigue at the end of last year. I’ve had really bad muscle aches and joint pain. There was a point where I was unable to walk properly. Headaches and migraines, brain fog, memory issues. Sensory overload was a big thing. Dizziness, vertigo, fainting. I had a time last year where I would just faint regularly.
“Fevers and sweats. Tremors. Sometimes I get full body – I don’t know if I’d call it a seizure – but like full body tremors. Blurry vision or at times loss of vision. Respiratory issues and breathing, which has gotten a lot better over time. It now just gets bad when I do get sick. Vomiting, diarrhoea, acid reflux, stomach pain, digestive issues, loss of appetite. Then ongoing cold symptoms – sore throat, runny nose – comes and goes whenever it feels like it. And then the other thing is sleep issues, so insomnia has been pretty bad at times.”
Every single one of these is a new experience for Lucy, who was the picture of health before February 2022. They’ve also come and gone over time. The respiratory problems aren’t a feature of daily life any more, but other symptoms have become more prominent.
After trying to push through, Lucy dropped all of her sports partway through the year.
“I can’t play sports. I can’t – even just going for a walk, that’s not possible a lot of days,” Lucy says.
“That was a big part of who I was. It defined a lot of my life, the sports that I played and the connections that I had in those areas as well. I’ve had to rewire my expectations of myself, because it went from expecting myself to get a really high score on a sports test or training heaps to just being able to get out of bed in a day.”
Lucy persisted with her schoolwork, trying to work around the brain fog, and got a scholarship to go to university. She had improved a bit by then and was even able to go on a hike – though she now says it’s hard to tell whether she was really getting better or whether some days were just good days. After spending the summer resting as much as she could, she moved into the halls at the University of Auckland.
Over her time there, she repeatedly got sick, battled fatigue and stress, and found her Long Covid worse than ever. Three quarters of the way through the year, she dropped out and moved back home.
“I got through quite a lot. But it was a time of pushing myself and then spending a couple days of not being able to do anything.”
When Lucy got home late last year, she found herself at the low point of her illness.
“I think my whole body just gave up because I allowed it to rest. I spent a couple months hardly leaving my house. The most I would see of people was when people came to visit me, but not being able to go to any big events or even church, which is really important in my faith,” she says.
“I was unable to sit up by myself. I was unable to walk by myself. I had a walking cane that I borrowed from my grandparents. I found eating really hard as well. Even just the energy to be able to lift up food to my mouth and digesting food, I realised, took a lot off my body so I’d often have to sleep after.”
Since that low, Lucy says, she has experienced some improvement.
“Each month gets a bit better. But there are definitely setbacks, like getting sick.”
We’re speaking the week after we originally scheduled our interview because Lucy fell ill the previous week and had to postpone. Every couple of minutes, she still needs to pause and cough for a moment or two.
“Last week, I spent the whole week in bed. I know that that sickness is going to put my immune system back a little bit so it might take me a bit longer to get back to where I was. But it’s also been cool to see that my body’s adapted and is able to bounce back quicker now than it used to.”
Lucy now finds herself able to leave the house for work, thought not as much as she’d like.
“At the start of the year, I thought that halfway through this year I’d be working at least 10 hours a week, but I’m not even able to do fully five yet,” she says.
“So yeah. I think that I am improving. It’s just slow. And it’s not linear, but no healing is linear.”
* Newsroom has chosen not to name Lucy at her request and is using a pseudonym instead.
For most of 2022, John says he was fitter than he had been in his 30s – which was pretty impressive for a man in his mid-60s.
“I had just finished the complete renovation of a very rundown four-bedroom house, was sailing my dream yacht up and down the Northland coast in preparation for an offshore voyage and had returned to the farm I founded 30-odd years before and was working very physically hard most weekends clearing scrub and rebuilding infrastructure,” he says.
For a day job, he worked at NorthTec in a managerial role and also served as a trustee and chair of a couple of charitable trusts and was actively involved in a local waste and recycling company on Waiheke Island, where he lives.
When Covid-19 swept through New Zealand in 2022, he did everything he could to avoid it as a lifelong asthmatic. Then, in November, he helped out a neighbour whose property had been damaged in a storm, only to hear a couple days later that she had tested positive. He came down with the illness as well and got given antivirals, but was still “miserable”.
As the days bled into weeks which bled into months, it became apparent that John wasn’t getting better.
“For a few months, I really believed I was getting better and that everything was quite temporary, particularly my respiratory health was becoming quite scary. I was on massive amounts of four different steroids, which made me bulletproof and everything was perfect, but it wasn’t, and I started to get janglier and janglier. It kind of snuck up on me a bit.”
By February, he was diagnosed with Long Covid. Breathing problems were just one of many symptoms he had begun to experience, with brain fog and fatigue leading the way. There were days he simply couldn’t walk. He left his job that month.
“Later in the winter of that year the brain fog would reach a point where I would lose the power of speech and not be able to solve quite simple puzzles. Reading a novel is really important to me. I can read a novel in a day and I like to read good literature and I got to the point with Long Covid where I could only manage about 20 minutes at a time of Lee Child.”
Over the months after that winter, his health improved, before taking a dive again this March. Though he hasn’t declined as much as last winter, he still uses crutches to get around and sleeps one to three times a day.
It took time for him to get to grips with the illness and its effect on his life.
“When I got to the end of 12 months, I was pretty pissed off with the whole thing. I was so bitter that I hadn’t got better. I got to my ‘Covid-versary’ and had my rant about it. Then, at 15 months, I went: ‘This has lasted longer than some of my life’s passionate and all-consuming relationships. So I have to understand it in relational terms,’” he says.
“At the moment, it feels to me like I have absolutely no control at all, which is impossible for me. So I have to figure what I can have control over. And I figured I could have control over whether I was going to be happy or not.”
When he struggled to walk, John found it got easier when he held his arms out in front of him. Before that, he grappled with balance problems and regularly fell over if he wasn’t on perfectly flat ground, which isn’t a feature of the farm he lives on.
“I talked to an old mate who’s a nurse and she said, ‘Oh yeah, of course. That’s how babies learn to walk, with their arms out in front of them. When their little arms get tired, they fall down at their sides and they fall down on their ass. So what’s going on is you’ve got a DOS version of how to walk still sitting back in your brain and that works – and it’s the Windows version that’s corrupted.”
Adaptations like these, John says, are the key.
He decided there were some improvements to his life, from his condition, if he looked at it through the right lens.
“The happy side of me says, ‘aww you poor bastard, Marc. You only have one day in 24 hours. But I have two. I have the day before my nap and the day after my nap’,” he laughs.
“Reframing. Adaptation.”
Amy and I don’t schedule an interview via Teams or by phone. Instead, we correspond by email.
That’s because more than two months after her original Covid-19 infection, Amy lost her ability to speak.
Before contracting Long Covid, Amy had recently moved to Rotorua from Wellington. She and her husband and their two teenagers were settling in to life in a new city. They went on walks in the Redwood forest, began making friends and establishing new routines. Amy was building up her strength to join a social rowing team.
In her professional life, she had just started as an autism coordinator in the child development team in the local Health New Zealand team.
Then, in March last year, the family came down with Covid-19.
“It was the sickest I had ever been in my life. It was not mild for me, but not as severe as others have experienced. Both my husband and I were in bed for a full seven days. I lost 6kg in four days because I couldn’t eat,” Amy writes.
“Despite managing at home, I did have a short trip to the hospital by ambulance with chest pains and shortness of breath – after a few hours, thankfully, they were happy for me to go home.”
Amy struggled with ongoing symptoms for more than a month before resigning. Negotiations with her employer about her return to work spiked her anxiety and she felt she had no choice but to quit.
Then, in early May, she lost her voice. “One moment I could talk, and the next I couldn’t. I spent overnight in the hospital, with the doctors exploring if I had had a stroke from my recent Covid infection – there was no evidence of stroke.”
It came back briefly a short while after that, allowing Amy to work for a couple of months at Victim Support. But when her voice went again, she was told she needed verbal communication to do the job and therefore had to resign.
“I have not regained my speech completely since. I have so many words running around in my brain screaming to come out but they won’t.”
Alongside the loss of speech, Amy has experienced some of the more common Long Covid symptoms too – fatigue, brain fog, migraines, joint pain and pins and needles, among others. She uses a walking stick when she leaves home, because her mobility and balance have been compromised.
“I have to have someone home with me when I shower as I can get very dizzy and lose my balance. Some days my fatigue is so extreme, I can’t get out of bed,” she writes.
“I am a shell of the person I was. I used to love to sing, not that I was any good, but now I can’t.”
One of the greatest disappointments for Amy has been the impact this has had on her family and the life they were building in their new home.
“My 18-year-old daughter has long-standing chronic fatigue, an autonomic disorder, Tourettes, and ADHD. She has not attended high school and lives an isolated life. My 16-year-old son has autism and ADHD. Part of moving to Rotorua was to start fresh for them, to get good strong networks involved in their lives,” she explains.
“Now, they are often looking after me, doing things for me to help me to get through the day. They are great kids and we are very lucky but life should not be like this for them. Long Covid has not only affected my life but my children’s; they should not have to look after their mother at their ages.”
Her identity was tied to her work in the disability space. Amy now doesn’t know whether she’ll be able to work again – and if she can, she asks, who will hire someone with her limitations?
Over the course of her illness, her symptoms and experience have got progressively worse. The fatigue has affected her muscles and fitness. Working out is important, but “it is a very fine line between keeping mobile and doing too much – I have yet to find this balance”.
The impact on Amy’s household’s finance has been significant too. They’ve downgraded from two vehicles to one and are in the process of selling their house. Amy has been able to access some additional support from ACC via a long-standing trauma claim but this doesn’t cover the bills.
In time, she hopes she will be able to study to become a psychologist who works with those with communication difficulties.
“I want to work in the health and disability sector again; my work in this field isn’t complete and I felt I had so much more to give – I hope I can get back to that but I don’t hold much hope with being employed again with my limitations.”
One thing Amy has picked up since falling ill is poetry, which she uses to come to terms with her grief. She offered to share one, about her loss of speech:
I miss the little things. I miss not being able to say anything when we drive past something interesting. I miss not being able to answer quick enough to a random comment someone makes. I miss trying to make a joke. I miss being able to sing. I miss not being able to explain myself fast enough and my words getting lost in translation. I miss saying all the things that run through my mind. I desperately miss being able to have a decent conversation (more than a couple of words) with my kids and my husband.My mind still thinks the words clearly, my mind still thinks fast enough to know what I want to say, I hear it. My brain is tired. I feel the strain when I push my words and try hard. I feel the strain when I’m out with others and push to get words out, to feel part of a conversation. To not feel so alone. Somedays are easier than others, never normal, never like it was. I miss what once was.