December 26, 2023
Source: ABC News (AU)
Photo / Image Source: Unsplash,
Sarah* fully expected that catching COVID would be a disaster for her health. As a health researcher, she'd followed the science of SARS-CoV-2 more closely than many people — she understood how serious the pandemic was.
She also has a rare form of muscular dystrophy, a genetic disease that causes her muscles to weaken and waste over time, and struggles with asthma and migraines. "My quality of life was already really bad, so I'd rather have died than get long COVID," says Sarah, who caught the virus from her husband in May 2022. "And then it happened."
But she wasn't prepared for how quickly long COVID would crack her marriage of almost 20 years.
After getting over her acute infection, suddenly Sarah was grappling with a completely new set of symptoms: fatigue "on a whole new level", brain fog that made her previously sharp thinking feel soupy and slow, shortness of breath and muscle pain — the usual list so-called long haulers report. She has pushed herself to keep working part-time from her home in Canberra, but spends the rest of her time resting, taking medication and supplements, hoping she'll recover.
While her husband can carry on planning catch-ups with friends and interstate work trips, Sarah can only take one day at a time. Her lack of energy and weakness means she can't go on holidays with him — she can't even go out to dinner with him or watch him play sport like she used to. And because he travels so frequently, she often has to isolate from him at home, so she doesn't catch COVID again and risk her condition getting worse.
"We're living two separate lives — it's like we're housemates, not really husband and wife," she says. "Long COVID has basically taken away my best friend and my soulmate. It's like somebody just ripped half of me away."
What it feels like to live with long COVID
Freya, Judy and Adam are part of a growing number of people with long COVID and they want to help you understand what it feels like.
The global public health crisis of long COVID is not a hypothetical problem, it's already here. Soon after the pandemic hit it became clear that a proportion of people who caught SARS-CoV-2 were not recovering and would remain unwell for months or years after their infection.
Now, estimates suggest at least 65 million, perhaps 200 million people have developed long COVID, a complex and frightening illness that looks remarkably like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-viral conditions that rob patients of their ability to think, work and exercise — their life as they knew it.
But long COVID is not just destroying people's health. Behind closed doors, in homes across Australia and abroad, it is irreversibly changing relationships — sometimes for the better, too often for worse.
Every day patients, partners, parents and children are grieving marriages, friendships and familial bonds that have fractured under the strain of this illness, often because it is so poorly understood, including by medical professionals. And experts are increasingly concerned about the long-term consequences for the broader society of all this pain and destruction, particularly if governments continue letting COVID rip.
"Every day we hear the story of how long COVID is affecting the way people can connect with others," says David Putrino, who runs a long COVID clinic as director of rehabilitation for the Mount Sinai Health System in New York. "This is a known phenomenon in chronic illness and disability [communities]: that when you first become disabled or experience a chronic illness, your world changes — it becomes smaller. And suddenly, friends and family members who can't easily interact with you stop interacting with you."
A complex, devastating condition
Until 2020, Dr Putrino worked mostly with people who had suffered stroke and traumatic brain injury — typically sudden events that result in disability and big shifts in the dynamics of patients' relationships. Now, he sees those same changes rippling through the families who visit his long COVID clinic.
The partners of some patients, he says, will acknowledge the difficulty of their situation but "lean in and say, 'I'm committed to you; our relationship hasn't changed, just your circumstances have'." Others, though, "have gone in the other direction, and said, 'Well, I never really signed up for this, this is the end of the relationship'. And unfortunately, the negative reaction is much more common."
There's no reliable data on how prevalent long COVID is in Australia, though a Victorian health survey recently found 14 per cent of respondents met long COVID criteria and numerous other studies suggest it occurs in 10-20 per cent of infections, with risk increasing significantly with each reinfection. It affects people of all ages and ethnicities, including children and those who experience only mild acute infections, though women seem to be more susceptible than men. It also affects vaccinated and unvaccinated people, though vaccination is strongly associated with a reduced risk of being diagnosed with long COVID. Any COVID infection can result in long COVID, is the message experts have been stressing.
And, contrary to common misconceptions that it's just a runny nose or pesky cough, its impacts are devastating. Long COVID often affects multiple organ systems generating potentially dozens of debilitating symptoms: crushing fatigue, including post-exertional malaise or "crashing" after even light physical or mental activity; cognitive dysfunction or "brain fog"; shortness of breath; chest pain and palpitations; dysautonomia and exercise intolerance; gastrointestinal problems and allergic reactions are the most common.
While some patients struggle with symptoms for a few months, "full recovery" appears to be rare, and many experience profound disability for years — tellingly, a recent study found long COVID patients' quality of life scores were lower than people with advanced cancers like stage four lung cancer.
Still, finding a definitive cause for long COVID — understanding why some people succumb to the virus while others seemingly bounce back just fine — has proven difficult. Instead researchers have narrowed down a cluster of likely mechanisms including persistent viral reservoirs in certain tissues; immune dysregulation and inflammation; blood clotting and coagulation issues; autoimmunity; reactivation of latent viruses like Epstein-Barr; organ damage; and disrupted brainstem signalling.
This complexity means treatment is often a matter of trial and error and frequently a game of disappointment: some medications alleviate symptoms for some patients, others find themselves working through long lists of vitamins and supplements, on a mission to find a protocol that might bring them some relief.
Just getting diagnosed in itself is often a huge challenge; still too few GPs understand complex chronic illnesses like long COVID or know what specific tests to run, and Australia's dwindling number of long COVID clinics typically have months if not years-long wait lists.
Misunderstanding, doubt, disbelief
But not everyone understands how severely long COVID symptoms affect patients — and many partners, relatives and friends refuse to believe it's a "thing". Often that's because of the relapsing-remitting nature of the condition: patients may go through periods of improved functionality before crashing and experiencing a flare-up in symptoms and having to rest again.
But post-exertional malaise (PEM) is not just "normal tiredness", says Laura Allen, telehealth manager at Emerge Australia, a non-profit support and advocacy organisation for people with ME/CFS and long COVID. It's a failure of metabolism and the immune system to tolerate activity or stimulation — even light and noise can trigger a crash.
"Often you'll see a couple who have both had COVID at the same time, and one recovers but the other doesn't, and there seems to be a bit of disbelief of, 'Well, I'm still not 100 per cent, but I'm getting better, and you are not — are you not putting in the effort? Are you not trying?" Ms Allen says. "But [PEM] really is something we don't see anywhere else, so it creates these boundaries of misunderstanding. This is an invisible disability: you might see someone out smiling, having a coffee … looking great, but you don't see what happens after."
Dee feels like a prisoner in her own body and wants more people to know the truth about her illness
People with myalgic encephalomyelitis, also known as chronic fatigue syndrome, say society has long underestimated and downplayed their struggles.
Doubt and disbelief can also strain relationships when it comes from outside them, from people who should know better. Jackie* says she still feels "traumatised" after supporting her son through long COVID last year — mostly because of the pressure it put on her marriage.
A healthcare worker in Melbourne, Jackie used up all her long service leave to stay home from work and care for her primary school-age son, which she describes as a "full-time job". But she and her husband still had to borrow money to pay for the many medical appointments and treatments, which she says was a source of tension.
The biggest stress, though, was her husband's refusal to believe their child was actually sick — he was clearly unwell, she says, and struggling particularly with PEM. But often patients' blood tests come back normal and, unless they investigate further, some doctors may be inclined to dismiss symptoms as depression or anxiety or something to tackle with exercise.
"Without a diagnostic test for long COVID I don't think he will ever really accept that [our son] had it," Jackie says. "I just kept thinking, 'If we just had a blood test that says yes, this is long COVID', then he would have fully believed and got behind me."
Instead, Jackie thinks his disbelief was seeded while they were in hospital, where they'd taken their son when he was struggling with confusion and disorientation during his acute COVID infection. There, she sought support from a social worker, thinking they could use all the help they could get. But it seemed to backfire when hospital staff later called her husband to tell him they thought Jackie was "mentally ill" — the inference was she had Munchausen Syndrome by Proxy. All she wanted was for her son to get better.
"It was a horrific experience, it caused a huge strain which we still haven't recovered from," she says. "We've had to get marriage counselling, I've had to have my own counselling to deal with the trauma of the medical gaslighting."
And while her husband supported her by "not intervening" in her efforts to look after their son, she says, "there was no emotional support, it was just removing himself from the situation. I worry now that the relationship is so damaged that it may not be repairable."
'I grieve the person who I used to be'
David Putrino hears various iterations of the "it's all in your head" story in his clinic all the time. It's an offensive refrain he says is fuelled largely by "fringe" practitioners and researchers who ignore the thousands of studies in reputable journals documenting the pathology of long COVID.
He also hears accounts from couples who are struggling with the adjustments they've had to make to their home, work and social lives. For instance, some people feel the strain of having to take on extra chores that their unwell partner can no longer manage; others suddenly feel like a single parent, which can breed resentment.
Then there's the risk of reinfection. "We know folks with long COVID are more susceptible to reinfection as a result of how long COVID can affect the immune system, and often they will become much more COVID cautious than their spouses," Dr Putrino says. "And so now there's an added layer of difficulty and resentment in the relationship where one spouse is wanting to embrace the fact that COVID has been declared "over" by governments … and one partner simply cannot do that … and suddenly there is this incongruent way that people are living their lives, which makes it very hard to … maintain a relationship."
Long COVID cases will likely increase with each new wave, so why are we closing clinics?
Internationally, countries such as the US are scaling up efforts to address long COVID but Australia continues to close its specialist clinics. Medical professionals in Australia and overseas say it is a move that needs an urgent rethink.
A parliamentary inquiry into long COVID this year briefly examined some of these pressures, with hundreds of experts and patients sharing emotional accounts of how the illness had decimated their relationships and reduced their ability to participate in social activities, with serious impacts on their mental health and quality of life.
"I have lost friendships because I don't have the energy to socialise," one patient wrote in her submission. "I am sad thinking about the things that I'm not able to do with my toddler and feel like I have failed as a mother. I am depressed thinking about … the strained relationship with my husband."
She went on, describing the loss of her sense of self: "I am using sick leave for the hours that I can no longer work. My mental health has deteriorated as I grieve the person who I used to be, not knowing if I will ever be that person again. I am scared of getting COVID again and so don't go out much anymore." She was also concerned about her ability to access antiviral medication should she catch COVID again: "I live in fear while everyone around me carries on as normal."
Snapshots like these are why Dr Putrino sees long COVID as a problem of loneliness, the physical health consequences of which have been compared to smoking up to 15 cigarettes per day. "We know that social connection tends to get under your skin and affect every aspect of physical, mental and emotional health," he says.
And yet, he's constantly hearing from people who claim to not know anyone with long COVID, or who dismiss it as "someone else's problem". "The reality is, you probably know someone with long COVID," he says. "But the only sign of that is that you're not seeing them anymore."
Longing for life
One of the most painful lessons Rob O'Brien has learned in the seven years his wife has been sick with ME/CFS is that patients suffer enormously, but the knock-on effects on family members are massively underappreciated. ME/CFS or long COVID "comes for one", he says, "but takes us all".
A British-Australian writer and filmmaker who lives in Amsterdam, Mr O'Brien has grown weary of explaining his wife Marjolein's illness to people who just don't get it. Is she getting better? Aren't her treatments working? Isn't she going on holiday with you?
"There's an expectation that she's going to walk out and everything will be normal again," he says. "They don't understand that … some people don't get better, they don't recover. And that's a frustrating role to be in as a carer because you're pretty much explaining full-time."
Before she developed severe ME/CFS – likely triggered by glandular fever's Epstein-Barr virus – Marjolein was an active mother of two, a talented marketing manager, a woman who once competed in Expeditie Robinson, the Dutch-Belgian version of Survivor. Now, she's confined to her bedroom. "A good day is if she can have a visitor for 15 minutes … and she's able to go downstairs and lie on the floor and have one conversation," Mr O'Brien says. "That's a really good day."
The way ME/CFS and long COVID decimates relationships, he now knows, is "an epidemic on its own". "Obviously, a relationship changes when you suddenly lose everything that was originally part of it: going out to dinner, having a physical relationship — many of these things are not necessarily good for patients. So it becomes different and … there's a period of mourning the relationship you had before," Mr O'Brien says. "[I focus on] managing our family and trying to help as much as I can. But a relationship almost becomes secondary to managing the fight against the disease."
It is a daily fight. Last year Marjolein had two photos blown up: of her children at the beach and a "healthy" her looking back at the camera. "They hang at the end of her bed," Mr O'Brien says, "which was our bed, until I moved into my daughter's room three years ago." The rest of the world needs to hear these accounts of people losing health and disappearing from public view, he says — of families longing for a life that feels torturously out of reach. "She looks at those photos every day, for inspiration to get better," he says. "That is a story."
Still, some men struggle to comprehend his commitment and seem more concerned about his future than his wife's illness. What about your needs, they ask. Then again, research suggests men are much more likely than women to leave their chronically ill partners. "It doesn't feel brave or heroic to care," Mr O'Brien says. "It just feels necessary, and I don't want the kids to ask me what I was doing when this all went down and they took her benefits away." (In August Mr O'Brien won a stressful four-year legal battle with the Dutch government body responsible for administering sickness and disability benefits after they wrongly assessed Marjolein's condition and cancelled her payments.)
As Mr O'Brien sees it, the rumbling public health crisis of long COVID and ME/CFS is too low on governments' lists of priorities, "perhaps because they were all happy to be 'done' with COVID and move on". "It doesn't play into the [narrative of], 'We conquered COVID and now we're preparing for the next pandemic'," he says. But unless the costs to individual and community health are acknowledged, he says — unless governments invest in coordinated education campaigns and finding effective treatments — the problem will only get bigger.
"People need to understand that a lot of people have been disabled in quite a short period of time," he says. "I just think there is a general lack of empathy. If you've lived a healthy life, you can't imagine your life suddenly being put on pause or stopped. And I'm trying to make that clear to people by saying, 'Take your friendships, take your social life, take all the things you love — take hanging out with your children in the park — and remove that. Now what do you do?' Because for me, that's the only way to get people to kind of understand."
A looming existential threat
Laura Allen agrees governments must do more to support patients and families with long COVID and ME/CFS. The number of people with long COVID who contact Emerge Australia's telehealth service has been steadily increasing since the pandemic began, she says – now they make up 30 per cent of all callers. "I hear a lot: 'I never knew how bad this could be until I got this unwell'. And I think that's like an evolutionary protective mechanism that we have — you don't remember pain for a reason … you kind of block it out. And I think [to address that] we need public health … the government needs to care."
Of course, governments are funding research on long COVID. But some see those efforts as a piecemeal "tick-box" exercise, particularly given they are at the same time pulling funding for dedicated long COVID clinics and GPs are reporting patients are falling through huge cracks in healthcare systems.
Meanwhile, one of the key objectives of Australia's national plan for managing COVID-19 in 2023 is to slow the spread of transmission, which should prevent more people from developing long COVID. But many experts have observed that goal is being undermined by state governments' refusal to publish timely COVID infection data, encourage mask-wearing or run education campaigns about the risks of long COVID.
And some world leaders aren't even pretending to care. A respiratory consultant who recently appeared at the UK COVID-19 Inquiry shared with dismay that when then prime minister Boris Johnson was presented with a Department of Health briefing on long COVID, he wrote "bollocks" across it, in large letters. "For the millions of sufferers whose lives, careers and finances have been shattered by the disease, it may be hard to disengage from the idea that this opinion fed into the disease being wilfully ignored," wrote Danny Altman, a professor of immunology at Imperial College London.
For David Putrino, the "one thing" he wishes people would understand sooner rather than later is the "looming social impact" of long COVID. "I'm talking about the workforce being diminished, the fact that people can't think the way they used to think — we're losing intellectual capital, we're losing physical capital, we're losing social capital," he says.
"And I wish people would understand the urgency of solving this, because what I'm seeing various countries doing in terms of their response to long COVID is they're throwing a token amount of money towards research and saying, 'Well, that will solve it', patting themselves on the back without understanding that this is just as large an existential threat as climate change."
And if we can't find a way to curb the spread of the virus and halt the increase in cases of long COVID, he says, those effects will bite sooner than we think.
"I don't know how to be more clear about how much of an existential threat this is, but it doesn't seem to be getting through — we still seem to be in this denial phase of 'othering' the illness," Dr Putrino says. "There's this shared fantasy that long COVID is someone else's problem, and I just think we need people to understand that it's everyone's problem."
*Names have been changed at patients' request to protect their families' privacy.
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