‘This isn’t a life’: The crushing burden of Long Covid

Ashleigh was saving up to travel overseas in the near future. Now, she’s housebound at 28, sometimes even bedbound, unable to drive or walk more than a short distance. “My mum has had to take care of me a lot this year, and I feel a bit bad for her experience as well.”

Michael, 32, was a busy Crown prosecutor. Now he’s been disabled for more than 18 months, taking long stretches off work and struggling with his mental health and damaged relationships. “It’s probably the worst thing that’s ever happened to me.”

Renee was elected as the first Samoan and first female Pasifika on the Palmerston North City Council in 2019. “It felt like I was just reaching the top of my career, with loads of future potential.” Then she spent a year living on the couch, with a commode toilet next to her because she couldn’t walk to the toilet. More than a year later, she can now take a few steps from her chair to the toilet. She can chat with people, if she paces herself, and use the internet. The rest of the time, she sleeps or rests. “This isn’t a life. I’m only hanging on for my kids.”

These are just a handful of the heartbreaking stories of New Zealanders with Long Covid, uncovered by a new research project into the extent of what has been described as a “mass disabling event” in New Zealand.

Between 6 percent and 10 percent of those who get Covid-19 end up with symptoms that persist beyond the period of acute illness. Sometimes these symptoms are minor. Sometimes they diminish or disappear completely, in time. Often, they are grievous and chronic.

The Long Covid Registry follows another nationwide study into the impact of Covid-19 in New Zealand. That project sought to interview everyone infected before the Omicron wave. About 10 percent of that population was reached, in the end, and 22 percent of those met the World Health Organisation classification for Long Covid. They reported stigmatisation, a lack of financial support, and trouble even getting their doctors to take them seriously.

Funded by the Ministry of Health and the non-profit EuroQol Foundation, the Long Covid Registry team wants to estimate the clinical, quality of life and economic impacts of Long Covid in New Zealand, as well as establish a registry to continually monitor health outcomes and inequities. It has produced an interim report but is still seeking to enrol participants who have self-reported Long Covid.

“At the interim point, we had 868 [people with self-reported Long Covid], now we’re over 1000. The ministry will want a final report but for me, it’s never final final because the registry will live on,” Paula Lorgelly, the registry’s principal investigator and a professor of Health Economics at the University of Auckland, told Newsroom.

“We will continue to, until people get sick of us, ask them monthly to tell us what their quality of life is like. I’d love to do a one-year follow-up, but that would just require some more funding.”

Most participants in the registry have also agreed to be contacted for other research projects, so it is creating a database of Long Covid patients for future examinations into mental health or other aspects of the illness.

There’s not much to build on in this space. In December, Newsroom reported that the Treasury, the Department of Prime Minister and Cabinet, the Ministry for Social Development and the Ministry of Business, Innovation and Employment had not done any work to discern the potential impacts of the illness on the economy or any other aspect of New Zealand society. The health and education ministries had also not undertaken any work on the impact on their respective workforces.

The testimonies are reminiscent of obituaries, albeit written by the person who has died. Long Covid patients describe their lives in the past tense, because the lives they used to have are now gone

Since then, a summer intern at the Treasury did estimate that Long Covid cost the New Zealand economy $140 million in 2022, though this doesn’t represent a formal Treasury finding. That report did note “it is likely that those who work in childcare, education, and healthcare are likely to be disproportionately impacted by Long Covid, given their significant exposure to Covid-19”.

The interim report produced by the Long Covid Registry and released to Newsroom therefore represents the most authoritative research on the burden of Long Covid in New Zealand to date.

These findings, alongside the qualitative testimonies collected by the researchers, make for grim reading.

The testimonies are reminiscent of obituaries, albeit written by the person who has died. Long Covid patients describe their lives in the past tense, because the lives they used to have are now gone.

Trina is 44. Before she got Covid-19, she was working full-time and enjoyed boxing, dancing and strength-training in her spare time. These days, she can only muster the energy to drive once or twice a week. She doesn’t work, and certainly doesn’t exercise. “Many days in PJs as not enough energy to shower and dress.” When her fatigue is at its worst, she has difficulty swallowing.

Borni Te Rongopai Tukiwaho is a 52-year-old theatre and festival producer and an arts and wellness consultant. He caught Covid-19 in January 2022 and has gone through a rollercoaster of symptoms and debilitation over the past 22 months. His symptoms have included major fatigue, head pain, breathing problems, tremors, elevated heart rate, anxiety, memory loss, brain fog, vertigo and severe digestive pain. At its worst, he was unable to walk to the lounge or sit up for more than a couple of hours. “I process more slowly, it’s difficult to have conversations if multiple people are involved.” He can’t work and until recently fell asleep at 3pm. “I saw the sun set five to seven days in the past two years.”

Rufial was three months pregnant with her third child when she got Covid-19. Before that, she was a busy mother, a regular at the gym, hosted church at her home and was in charge of all of the domestic labour – cleaning, sewing clothes for the kids, buying the groceries, cooking and baking and watching the children. “Long Covid I feel has stolen motherhood from me, I’ve missed all my children’s firsts, I’ve not gone to the playground for a year, I’ve quit my job, I need help using the bathroom and showering most days, and sleep for 15 hours a day and am in bed most of the day.” Most days, she feels hopeless.

The Long Covid Registry put participants through a health-related quality of life test which checked how they were doing before and after getting Long Covid in five domains – mobility, self care, usual activities, pain/discomfort and anxiety/depression. Respondents noted their ability to carry out their usual activities were much, much worse than before. A majority also reported declines in mobility and pain/discomfort, with a minority saying their ability to care for themselves had worsened.

This test produces a final, numeric score to quantify a person’s health-related quality of life. Past research in New Zealand has found an average value of 0.847 out of 1. Respondents to the registry said that before getting Covid-19 they had scores of 0.853 (for Māori) and 0.892 (for non-Māori).

Today, those values have fallen to 0.484 and 0.533, respectively. That’s on a par with the values reported by people with multiple sclerosis in New Zealand.

“That’s really stark,” Lorgelly said. “It’s a significant reduction in their quality of life and one of the elements it seems to pick out is their usual activities. They’re much worse at doing their usual activities – things they would normally do before they had Covid, now they’re not doing.”

Nearly four in 10 respondents said they were doing less unpaid domestic work than before they got Long Covid, with 9 percent of non-Māori saying they had stopped entirely. Of the 14 percent of non-Māori with children, two thirds said they had to reduce the amount of time they spent looking after their kids. Most of those who provided unpaid care to other family members reduced or stopped doing so.

About a quarter of non-Māori and 15 percent of Māori reported an improvement in symptoms over the last three months, and half in each group said there had been no change and the remainder said things were getting worse.

Fatigue was the most commonly reported symptom, followed by brain fog, breathing and sleep problems and muscle pain. About half of respondents said they felt stigmatised for their illness at least some of the time.

Long Covid has had a serious impact on the employment of the study cohort as well. Māori are working 7.5 fewer hours a week than before, with non-Māori working almost 10 fewer hours. About half of respondents have reduced their hours, and two thirds have taken at least some time off.

Four in 10 Māori and a third of non-Māori have used up all of their sick leave, and most of these have had to take leave without pay. About three quarters of the group have worked despite being unwell.

On average, Māori have taken 96 days without pay because of Long Covid and non-Māori 73 days. Family and friends have also taken more than a month off to care for them.

About half of the cohort said they had experienced a decline in income since they were infected with Covid-19. One in five said they had started getting a new benefit since getting Long Covid.

Medical costs have been steep, particularly for those who have managed to see a specialist. On average, non-Māori respondents spent $1417.63 on healthcare related to Long Covid, and Māori spent $863.60.

“There’s many people who are just struggling, who don’t know where to go, can’t get a confirmatory diagnosis from a doctor and then that stops you then going to Winz and having that conversation with MSD about what’s the next level of help and support, because it’s ignored,” Lorgelly said.

Again, all of this shows up in the testimonies.

Sharon ran marathons, volunteered and provided for her elderly parents before she got Long Covid. She liked to spend time with her adult children, tramping with them and going for coffee. After she got Covid-19 in May 2022, she never returned to work. “No longer provide for my parents, they are now providing for me along with my partner.” She struggles to stomach and swallow food, and has lost 15kg. “No dates with my kids, no more hikes. No socialising with friends, it’s very isolating … I could write a lot more, but life is not nice and is hard to keep going. Cried heaps …”

Nic, 37, worked full-time and went mountain biking in her spare time. “I was fit and active and able to do all of the fun things without even thinking about it.” She’s been housebound for 19 months. “I have gone from being fit and active to having really bad fatigue and brain fog (my two worst symptoms). I have been lucky I haven’t been fully bedbound, but I have come close to it a few times.” She finally quit her job last October because of the fatigue. “I am so lucky to have Mum just around the corner – I couldn’t have made it otherwise without her help. Even the smallest things are so hard to do with the fatigue now.”

Sarah is a 46-year-old solo parent to four children. She was employed full-time before Covid-19, but lost her job and medically retired after 10 months of fighting the illness. “Left on Winz benefits that now don’t even cover my rent. Have a trauma policy I paid for nine years refusing to recognise Long Covid as a condition so won’t pay out – I am being plunged into poverty.” She doesn’t have the option not to take care of her kids and doesn’t have the money to make it easier, so she makes their lunches, makes school uniforms rather than buying them and has to get them all to school as well. “Then I come home and collapse. Drowning in despair.”

Where to get support for Long Covid

Long Covid Support Aotearoa – A support group for people in New Zealand with Long Covid

Healthline – Free call on 0800 611 116 for health advice

Victoria University literature reviews – A monthly summary of the latest research on Long Covid

Healthify – Advice on managing Long Covid

Long Covid Registry – To participate in ongoing research on Long Covid

Where to get help for your mental health

1737, Need to talk? Free call or text 1737 any time for support from a trained counsellor

Lifeline – 0800 543 354 or (09) 5222 999 within Auckland

Youthline – 0800 376 633, free text 234 or email talk@youthline.co.nz or online chat

Samaritans – 0800 726 666

Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)

What’s Up – 0800 942 8787 (for 5–19-year-olds). Phone and online chat counselling is available seven days a week from 11am-11pm.

thelowdown.co.nz – or email team@thelowdown.co.nz or free text 5626

Anxiety New Zealand – 0800 ANXIETY (0800 269 4389)

Rural Support Trust – 0800 787 254 (0800 RURAL HELP)

Supporting Families in Mental Illness – 0800 732 825