Young people with long Covid say they feel “invisible” as they live in their own personal lockdowns, giving up jobs, study and relationships, while the rest of the world moves on. Cushla Norman talks to some long Covid sufferers and medical experts about the debilitating nature of the disease, particularly for young people, and examines how much support there is for them in our health system.
Evidence is emerging of the unexpected toll long Covid is taking on the brains of young people. Researchers say this is a big change from the pre-pandemic situation when cognition impairment tended mainly to be of concern for older adults.
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‘Like you’ve lost your entire life, but you’re still here’
Two years ago, Karina Tickle was a gym-loving statistics student who enjoyed exploring new places. Now she’s 95% bedbound with severe long Covid.
“It feels like being dead while you’re alive,” she says. “It feels like you’ve lost your entire life, but you’re still here.”
Long Covid is when the effects of Covid-19 last more than 12 weeks. It can cause more than 200 symptoms and affect any organ in the body.
“I’ve got that crushing fatigue, that full body weakness, issues with my digestion, with my heart, with my breathing, with brain fog.
“It really feels like something that’s completely taken over every part of my body.”
24 years old and offered a rest home
Tickle became so unwell she ended up in Wellington Hospital for seven months.
She says doctors had told her to keep up with a normal life, exercising and working. “I pushed and pushed and pushed for about a year until I woke up one day and I literally didn’t have the strength to eat or drink anymore.”
“I try not to compare my life to others or to what it was before.” (Source: 1News)
When she arrived at hospital late last year she was “mind blown” to see other young women there experiencing the same long Covid issues.
Two of the women went into a rest home. That option was also presented to Tickle, but she declined.
“How do you think about being a 24-year-old and being told, in all honesty, here’s what we can do for you, send you off to a rest home and just wish you luck? It feels horrible.”
Asked if it’s practice for hospitals to offer long Covid patients rest homes, Health NZ’s director of the National Clinical Networks Mary Cleary-Lyons said rest homes and similar residential facilities are often better placed than hospitals to provide longer-term care to patients with chronic conditions and ongoing needs.
Impact on young brains ‘alarming’
A study by Northwest Medicine in Chicago compared neurologic symptoms across three different age groups of long Covid sufferers – younger, middle-aged and older adults.
The researchers hypothesised that older adults, those over 65, would have the worst long Covid symptoms, since they’re more severely affected by acute Covid.
But it was the younger adults (18 to 44 years old) who had the worst scores for cognition, working memory, fatigue, sleep, anxiety, and depression. The scores for middle-aged adults were slightly better across most measures, while older adults generally performed the best.
“The impact of long Covid is causing disproportionate morbidity and disability in younger adults in their prime who provide much of the workforce, productivity and innovation in our society,” says Dr Igor Koralnik, Northwester Medicine’s chief of neuroinfectious diseases and global neurology.
Otago University epidemiologist Amanda Kvalsvig says the results are alarming.
“It is not usual or normal for children and young people to be very tired all the time. It’s not usual or normal for young people to experience memory problems… This is a time when young people should be cognitively at their very best.”
The study didn’t explain why the results showed this unexpected pattern. But Kvalsvig says one possibility could be that young people were starting from a healthier baseline so changes to their health would be more obvious to them.
Tickle says it feels like she has aged significantly. She struggles with thinking of words, memory and concentration. “I feel like my brain is that of someone that’s at the end of their life, not at the start.”
‘We don’t believe the pandemic ever ended’
Before developing long Covid, Raquel Parackal was a vibrant and talented medical student at Otago University.
Now 28, she is 90% bed bound, has chronic pain, migraines and significant heart problems which can cause the kind of pain people experience during a heart attack.
“I’m not a medical student anymore, and I can’t do my research, and my life is just very simple. I don’t leave my room too much because I have to rest as much as possible,” she says.
Parackal has had long Covid for four years, and ME (myalgic encephalomyelitis) for six. She uses a wheelchair and walking stick. She has permanent nerve and muscle damage in her legs and using the wheelchair helps prevent her heart rate from soaring.
“If I’m going to the bathroom, I bring my walking stick with me, and I can handle that OK. But anything longer, my heart rate starts to increase quite a lot, and the pain afterwards is just horrible.”
Leaving her studies was “extremely difficult”, she says, but she’s using her medical knowledge to help support others online, making education resources about new research.
“What drives me is the fact that we’re in the situation at all, especially with able-bodied society believing that the pandemic is over. We don’t believe the pandemic ever ended, and we’re all living proof of that.”
‘No one is immune to this’
Elvira Edmonds said she’s “moderately” affected by long Covid compared to others, but her symptoms are still bad enough that she had to leave her job at a government department and now rests 80% of the day.
The 28-year-old has gone from being someone who loved to be busy – working full-time, dancing, sewing and making art – to someone who does very little.
“I really want people to know that no one is immune to this, anyone can get long Covid. I didn’t think it would happen to me.”
She’s now had long Covid for about two and a half years and also has ME as a result.
She’d hoped that, with enough rest, she would be able to return to study, but that hasn’t been the case.
“Being sick sucks, being constantly sick for years sucks even more.”
Not being believed ‘brutal’
John O’Malley has gone from walking 27,000 steps a day to struggling to muster 200.
“All my muscles felt like they were on fire, and my joints felt like a 100-year-old body.”
The 22-year-old has had long Covid for three and a half years. He’s also been diagnosed with ME.
The aspiring electrician has had to give up his apprenticeship and any kind of physical activity sets him back.
“I really want people to know that all of us who have long Covid are extremely depressed and sensitive, and would like some sort of recognition, as our lives have been stolen.”
He said it’s “brutal” when people don’t believe long Covid is real, especially when those people are family and friends. “They compare their Covid situation and struggle to understand why mine has stuck around for more than 14 days.”
But despite his aching body and depressed mood, O’Malley still has some fight left. “I don’t need them or rely on them for hope,” he says. “I am strong enough to get out of this mess myself.”
Mixed experiences with medical system
Isla Hewitt originally thought she was having panic attacks, but it was her heart rate going through the roof.
The 25-year-old has found the medical system “incredibly supportive” during her three-year battle with long Covid.
“I was very fortunate to be believed by my doctors. From day one, they actually had to convince me that I was very sick.”
But she knows that’s not everyone’s experience.
Tickle says she encountered disbelief. “I had a lot of things said to me that I still can’t even believe to this day, like that I just needed to try harder, or that it was a mental illness, or that I was doing it to myself.”
Kvalsvig says that, unfortunately, that’s a common story. “The medical establishment has been very slow to pick up on long Covid, it sits outside normal medical experience. And I think for some clinicians, that feels challenging, they don’t know how to help, they don’t know what to say.”
Effect of vaccination on long Covid
Tickle, Parackal, Edmonds, O’Malley and Hewitt were all vaccinated.
Hewitt said doctors in hospital were shocked that someone could be this unwell from Covid when they had the jabs.
“They also said, if I’m this sick with being vaccinated, then if I hadn’t had them, I probably wouldn’t be here, so the vaccine helped save my life,” she says.
A paper by the Public Health Communication Centre Aotearoa says vaccination reduces the risk of long Covid following Omicron infection, but there’s still a 10% risk of long Covid among vaccinated people.
Kvalsvig says that finding is not reflected in New Zealand’s vaccine policy which is more focused on older people.
Those under 30 years old are not eligible for additional boosters unless they are severely immunocompromised or meet other criteria.
“Given this new evidence, New Zealand needs to look at its eligibility criteria. They may need a revision, and it may be that the best option is to offer vaccines to families so that they can choose to take them up if they wish,” Kvalsvig says.
But Dr Nikki Turner from the Immunisation Advisory Centre said there’s no evidence this would reduce the burden of long Covid.
“Most of New Zealand is both vaccinated and exposed to disease, so we are seeing a lot less long Covid, and a lot less severe long Covid. I do not think there’s evidence that now, five years down the track, for healthy younger people who have been exposed repeatedly to Covid and have been vaccinated, that repeated, ongoing vaccinations would make a difference.”
How many people have long Covid?
There’s no official national count of the number of long Covid cases. The long Covid registry, run by Auckland University, has 1348 people on it as of March 2024. But studies estimated 10 to 20% of people infected by Covid may go on to develop long Covid. This means there could be 200,000 people with long Covid in New Zealand.
Kvaslvig said the government needs to step up and address long Covid with a strategy and start counting.
“When we know the size of the problem, then we know how much resource we need to put into it.”
What support is there for those with long Covid?
Tickle describes the support for long Covid as “pretty bare bones”.
“Really the majority of it lies on yourself.”
She said she’s lucky to have family and friends to do a lot of the heavy lifting, and she also has health insurance. “I owe pretty much everything that I’ve managed to get to private care.”
Kvalsvig says there needs to be systems and supports in place for families helping loved ones.
“These young people and their families are going through an absolutely awful experience, and they’re doing so quite unsupported.”
New Zealand’s only publicly funded long Covid clinic closed in 2023. The five-month pilot clinic in Christchurch didn’t secure funding to stay open.
The Ministry of Health is no longer undertaking any policy or evidence work on long Covid.
A ministry spokesperson said in a statement that people living with long Covid continue to receive care under the leadership of Health New Zealand.
They said that in March the Government had announced a package of eight initiatives to support timely access to quality primary health care for all New Zealanders.
“We expect this investment to support people living with long Covid to get the care they need when they need it.”
‘We still exist’
Hewitt said one of the major challenges of long Covid is that it’s invisible.
“I really want people to know that we still exist. Just because we look like shadows of ourselves now doesn’t mean that we will always be that way.
“I just want people to know that we’re still here.”
“Our lives have been stolen” – Watch this story on TVNZ+
