Long Covid leads to long suffering for many

Long Read

Halfway through Lucy’s* first year at university, where she was studying to be a Doctor, she dropped out. For the next two months, she barely left the house. She was almost unable to sit up in bed and could not walk by herself. 

In another instance, Renee found herself in the midst of a reelection campaign for Palmerston North City Council when she realised she just could not do it. After delivering a keynote speech at the Pasifika Fusion Festival, her husband carried her to the car. She slept for five days and woke up to find she could no longer walk.

John recalls feeling fitter in his early 60s than he did in his 30s. Alongside a Role at the Polytech, he helped run a charity he founded and spent the weekends labouring on his cooperative farm on Waiheke. Then it all went downhill. Within a few months, he needed steroids to help him breathe and struggled to read more than 20 minutes of an airport novel in a day.

Amy worked in the Health and Disability System as an Autism Coordinator in child development. Less than a year after taking on this role, however, she ended up in hospital for a brief stint with chest pains and shortness of breath. She was cleared to return home, but within a couple of days had lost the ability to speak.

All four are suffering from Long Covid. They represent just a tiny fraction of the thousands of patients around the country – a number that grows by the day, with estimates that between 2% and 20% of acute cases result in at least some longer-term symptoms.

Lucy, John, Renee and Amy are also just a handful of the more than 1300 people enrolled in New Zealand’s largest Long Covid research project: the Long Covid Registry.

Long Covid Registry

Lucy, John, Renee and Amy have all had different experiences, but each speaks to many of the findings of the final report of the Long Covid Registry, which was provided to the Ministry of Health in June and then released publicly by the researchers in August. Although it was partly funded by the ministry, the report has yet to be released on its website.

Some of the findings are not particularly surprising, although it is helpful to have them confirmed in a New Zealand context. Fatigue and brain fog were the two most commonly reported symptoms, followed by sleep issues, breathlessness and muscle and joint pain.

But the report goes beyond the merely clinical. Paula Lorgelly, a Professor of Health Economics at the University of Auckland and the Lead Author on the study, said she wanted to capture the wider effects Long Covid has on patients’ lives.

This included asking about experiences with the health system, impacts on employment and home finances, social stigma and overall quality of life.

The registry project put respondents through a health-related quality of life test which asked how they were doing before and after getting Long Covid in five areas – mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Participants said their ability to carry out their usual activities was much worse than before. A majority also reported declines in mobility and increases in pain/discomfort, with a minority saying their ability to care for themselves had worsened.

This test produces a final numeric score, accounting for responses in all five areas. The figure ranges from 0 to 1, with higher numbers equalling a higher quality of life. Past research has found Māori tend to score 0.822 and non-Māori get 0.847.

Long Covid sufferers reported values of 0.488 for Māori and 0.529 for non-Māori. These values are lower than the numbers reported by a New Zealand cohort of multiple sclerosis patients in a separate study.

Renee, the Former City Councillor, recalled that in the worst days of her illness, “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 could not see me when I went toilet. I lived like that, lying next to my bucket, all day, every day, for months.”

Lorgelly, the Researcher, said she was surprised by the scale of the quality of life decline.

“Interestingly, it has been confirmed in other international research too, that this is a really debilitating condition.”

Virtually every participant in the registry said they now exercised less than before. Renee could no longer walk. But even people like Lucy, whose passion before she got Covid 19 was school sports, found themselves struggling with basic mobility.

“I cannot play sports. I cannot – even just going for a walk, that is not possible a lot of days,” Lucy said.

“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 have 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.”

Stigma and social isolation

Most of the respondents in the registry had told their friends and family about their illness, though about a fifth had kept the information as private as they could. A large proportion did say they felt stigmatised at least some of the time.

“I often wonder if my friends and extended family believe how I am feeling as my symptoms are invisible,” Amy said. Even if they do, she had just moved to a new city when she contracted Covid 19. “The relationships I had started building when I moved to Rotorua are not strong enough to withstand the impacts of this illness,” she said. “I have no social life.”

John said even well-meaning people did not understand the seriousness of Long Covid.

“Most people have no idea both how severe and how extensive this problem is. At times, it feels to me like the team of five million marched off the Covid 19 battlefield leaving behind the injured and the maimed with scarcely a look back,” he told Newsroom.

Another common theme was the impact on families. Many say their families are coping worse than before and that they need more support. It is something that came up in Newsroom’s interviews as well.

“I have been married for 17 years now. I thought we were pretty rock solid,” Renee said. But Long Covid has stressed that relationship. “In terms of physical stuff, I cannot reach my feet. My husband sets my clothes up in the morning so I can put them on.

“I can do that in the mornings but at the end of the day, I cannot take my clothes off. My husband has to do that for me. Those little things, they all add up. He is the one who has to fill my water bottles and make sure I have all my meds. Even with things like the shower, my husband has to pull the showerhead down so I can reach it so that when I have my shower, my chair needs to be there, the showerhead has to be down.”

When he forgets and then leaves for work, Renee has to ask her father-in-law who she lives with to fix the shower.

“I cannot make my own cup of tea. My father-in-law has to do that for me. I am grateful to have him helping me but it has an impact. Every time I do that, it eats away at my soul a little bit.”

Doctors and bills

Interactions with the healthcare system also frequently raised issues of stigma. A sizeable minority of participants (42% of Māori and 36% of non-Māori) in the registry were undiagnosed.

“We have got diagnostic codes now in the health system. We desperately need a report out of the system to give us some indication of how many people have a clinical diagnosis. It is all very well having the ministry provide codes but then does the ministry not also want to know how many people have been diagnosed?” Lorgelly said.

“It comes back to whether doctors are using the codes or not coding it but writing a description that is ‘Long Covid’. Or even can find the code – it is not called Long Covid in the system, it is called Post-Covid Syndrome so maybe your doctor does not know how to code it.”

And that is assuming doctors are open to diagnosing patients with Long Covid, which is not always the case.

“When I first started having Long Covid symptoms, doctors did not want to diagnose me,” Lucy said. “A lot of people said it was not really a thing and that they are just going to classify it as symptoms relating from Covid 19 but were not diagnosing me with anything.”

She gave up on seeking a diagnosis once she realised there weren’t any treatments for Long Covid anyway. Then, when she crashed and had to drop out of university, she started over again.

“I saw quite a few doctors and a lot of them just did not really know how to treat me. I was referred to a general internal medicine specialist. He was actually really good, really understanding and he ended up diagnosing me with Long Covid and chronic fatigue.”

Lucy’s experience of dropping out of university is not uncommon. In fact, more than two-thirds reported a change in their work or study situation. The average number of hours worked each week by those in the registry dropped by 7 for Māori and 9 for non-Māori.

A majority continued to work at stages despite being unwell and on average had missed at least a week of work in the four weeks before enrolling in the study. All four participants Newsroom spoke to had quit working or studying entirely for at least some time. Even now, Lucy works just 4.5 hours a week.

“At the start of the year, I thought that halfway through this year I would be working at least 10 hours a week, but I am not even able to do fully five yet,” she said.

As a flow-on from that, family finances also took a hit from Long Covid. About half of the respondents told the registry their income had decreased since their Covid 19 infection. A small number had accessed financial support from the Government. But on average respondents paid more than $1800 in the past six months for additional support for their condition.

“That finding has not been surprising,” Lorgelly said. “The US recognises Long Covid as a disability and therefore that opens up access to financial support.”

That is not the case in New Zealand. Renee is unable to work and as a result, the couple had to sell their house and move in with her in-laws. Her husband, who hosts a community radio show, earns $15 a week above the Winz threshold for most benefits, so she has had almost no financial support from the Government.

Recently, she visited a Winz office to apply for the Supported Living Payment, which is available for those who have a condition preventing them from working for two or more years. It has now been more than two years since she last worked. But, Renee said, she was again rejected because her husband earns too much, even though he is supporting her, three children and his father.

“Having access to the Supported Living Benefit would have helped me to pay for things that would help me get my life back,” she told Newsroom. That includes unfunded treatments, counselling for her and her family, prescription fees, accessible clothing, a haircut and travel to Wellington for specialist appointments.

“That is all to say, being sick and disabled is bloody expensive, and I just do not see how I am supposed to ever get better when I cannot access the only stuff that might help,” she said.

“Am I doomed to stay in this bed forever?”

*Newsroom has chosen not to name Lucy at her request and is using a pseudonym instead.

Marc Daalder is a Senior Political Reporter at Newsroom. He covers climate change, health, energy and violent extremism. The above article, which appeared on the Newsroom website, has been reproduced under a Special Agreement.