From the team at Capsule
They’re called the ‘missing millions’ – the enormous number of people who are now on sitting on the sidelines of their own lives, struck down by long Covid. In NZ it’s a major problem, and a problem that afflicts women, far more than it does men. And, once again, women are on the back foot as they navigate a medical system that often gas lights them about their symptoms before they’re finally able to get a diagnosis.
Sarah Robin’s life has been tipped on its head.
Sarah had always led a fit and active lifestyle – in fact, early last April, she had just been on one of her regular 40km pushbike cycles, the weekend before she caught Covid-19.
Ominously, the then-49-year-old tested positive on April 13, but considered herself one of the lucky ones when she only experienced mild symptoms. However, two weeks later, instead of feeling back to her usual energetic self, she was feeling quite the opposite. If anything, she was getting worse. Much worse.
Sarah called the nurse at her GP’s practice, to ask what she should do, particularly as she was starting to notice symptoms that were concerning her.
“I told her that every time I stood up, within a few minutes my heart did stupid stuff,” she says.
“I’m dizzy, I’m exhausted. My legs felt like led. I had heart palpitations, an erratic heart-rate, my vision just wasn’t right, my ears wouldn’t pressurise – something’s just not right. I told her I wasn’t sure I could drive the 1km down to the doctors, that’s how bad it was.”
So, her GP had her come in for a check-up. “They took one look at me and ended up doing an ECG,” she says. “I’d love to know what those results were, because they threw them out, saying they didn’t make any sense and were redoing it. The next lot was normal.”
She stopped to get a blood test on the way home (that didn’t raise any red flags), managing to last another two days, before she decided it was time to go to the hospital in the middle of the night.
“I decided I was dying,” she says. “I couldn’t get my resting heart rate below 100.”As someone who, as we said was very fit, and wore a Fitbit and knew they had a low resting heart rate (typically around 55) it was particularly concerning.
“I thought, okay, I must be panicking,” she says. “I’m doing this, but I don’t know how. I splashed water on my face and was lying in bed trying to sleep with my legs up the wall, before we called the ambulance.”
When she got there, the diagnosis was perhaps the very last thing she expected to hear.
“I was diagnosed with menopause,” she says.
“I was put on a beta blocker and sent back to my GP. I remember at that moment thinking, ‘I don’t know that many people are prescribed beta blockers for menopause’, and also, I wasn’t aware of any menopause symptoms, until I got Covid.”
After that she was discharged and told to go back to her GP. “She basically said, what was she supposed to do with me, because it certainly wasn’t menopause and sent me to the A&E. They tested everything again, and some other tests and I left with some high strength anti-inflammatories.”
For the next eight weeks she was at her GP once a week, getting one medical certificate after the other. At the same time she tried going back to work. “I lasted two hours before they sent me home – apparently I was grey.”
It would be weeks – and many different trips to different medical specialists, and back to hospital – before Sarah would get the true answer as to what was wrong with her: long Covid.
Sadly, Sarah is one of the many, many women in New Zealand – and abroad – who are being diagnosed with long Covid, and worse still, after very long periods of time, during which, many women are being gas lit about their symptoms along the way, disbelieved by medical professionals, only making their symptoms and prognosis worse.
Thankfully, for Sarah, things turned a corner when she asked to be referred to a brilliant cardiologist – thanks to the fact that the company she worked for had medical insurance. “I was so lucky I could go private – at that stage there was a four-month wait,” she says. “I already felt like I was going insane.”
The cardiologist who did an echocardiogram and was later fitted with a heart Holter monitor which observed her for 24 hours, even before her first appointment.
Sarah had an idea what was wrong with her – every single time she stood up, within minutes her heart rate accelerated, to a extreme rate, leaving her feeling faint, dizzy and exhausted. Just the act of standing up had become near-impossible.
When the cardiologist asked her what she thought might be going on, Sarah said: “Well, everything I’ve looked at tells me this is POTS (Postural Orthostatic Tachycardia Syndrome).”
“She said I was bang on, and at that point I burst into tears. She said, ‘no no no, we’re not going down that track. Let’s get you on to a program for getting this under control and work on it from there.’”
In a follow-up letter, she wrote to Sarah: “The first thing is to recognise this is a real phenomenon and that the changes that you are feeling result of sudden deconditioning from a state of previous high cardiovascular fitness. Alleviating the anxiety out of the algorithm is important and I would recommend reading more about pathophysiological changes.”
She gave other recommendations (including compression gear, which took 11 months to turn up), salt-volume loading, taking electrolytes, and a regime to regenerate her cardiovascular system (all without doing any upright exercise). Interestingly, she also added of her former treatments and diagnoses: “Unfortunately you been told a wide array of symptoms including this is normal to a menopausal phenomenon and I think some of that information has not been particularly helpful.”
But, like all long Covid sufferers – many of whom also suffer from POTS and dysautonomia, which Sarah was also diagnosed with – Sarah is discovering just how ‘long’ that recovery period for long Covid is.
She still finds it difficult to stand. She struggles with her heart rate and high blood pressure. She’s been unable to return to her workplace full time (her workplace has been incredible she says, partly due to the fact her boss has an understanding of Chronic Fatigue Syndrome), but has been able to start visiting for increasingly longer amounts of time. She hasn’t been to a supermarket, or gone shopping in a year.
She’s had to postpone her much looked forward to trip to Hawaii to mark her 50th birthday. She and her long-term partner split up this year, and she completely understood – she hasn’t been able to go anywhere or do anything. Her life feels so far removed from the full, exciting life she had just over a year ago.
“I’m alive, but I’m not living,” she says. “I’m one of the missing millions”.
But despite the incredible frustrations of her illness, Sarah is remarkably upbeat and positive. She’s worked with a wonderful physio and occupational therapist – as well as the brilliant cardiologist. She knows her recovery isn’t linear, but she is full of optimism for the future – and that she will make that Hawaii holiday soon.
Unfortunately, Sarah’s story, her struggles with long Covid and her long road to getting answers, is certainly not uncommon. The statistics of the number of women worldwide and in NZ suffering from long Covid is alarming.
As of January this year, the CDC (Centres for Disease Control and Prevention) reported that around 15% of the population in the US had suffered from long Covid symptoms at some point. A Harvard study found that in the US alone, long Covid will cost the economy about US$16 trillion – that’s a tenth of the annual US GDP. To really get a scale of that cost, in New Zealand dollars that equates to $25,721,927,060,800.00, which is several times our GDP.
We spoke to Jen Mepham, a cardio-respiratory physiotherapist who was the Chairperson of the Physiotherapy New Zealand Cardio-respiratory special interest group throughout the pandemic. She is also a member of the expert advisory group for the Ministry of Health Long Covid Guidelines.
Jen told us that the exact numbers of those who are suffering from long Covid in NZ are difficult to pin down because not every case of Covid-19 is being reported, nor is every case of long Covid being correctly diagnosed or reported. But it’s believed that between 10-30% of all non-hospitalised cases of Covid will go on to develop long Covid.
“Around 50 – 70% of hospitalised cases will go on to develop long Covid,” she says. “It’s also affecting Maori and Pacifica people more disproportionately, particularly as they were involved in some of the larger cluster outbreaks, and the traditional healthcare system already doesn’t meet their needs.”
Sarah fits right into the range of people who it seems to most often develop Covid, says Jen. Where they’re seeing the most cases, is among women, with an age range is between 36 – 50 and who suffered from mild, acute cases of Covid. It’s also not uncommon for it to strike people who were otherwise fit and healthy – around a third of cases occur in people with no pre-existing conditions, who were fit and healthy prior to being infected.
Jen says that in some aspects, it makes sense that women of this age group are more susceptible, given the stresses on their lives. A lot of them are healthcare workers, or working in education or who were frontline, essential workers. “At that age, you’re also likely to be raising young families, or caring for ageing parents, or doing both,” she says. “They’re likely to be taking their holiday days as school holidays – so they’re likely completely flat.”
It’s also these women who’re having a hell of a time just getting a diagnosis. Particularly as there are over 200 symptoms that have been tied to long Covid. The most common are chest pain, shortness of breath and post-exertional malaise (PEM), which is essentially a crushing fatigue that comes on after activity but is out of proportion to what you’re doing (like, say, vacuuming the house) and can often be delayed by a few days, making it difficult to understand.
“These women get gas lighted,” says Jen. “They get told to just get on with, that they can’t possibly actually be that tired. So, these people push through symptoms and actually, for those people, pushing through symptoms is really unsafe, because it means you’re going to have a crash and be limited in your abilities.”
If you think about that situation in terms of women to start off with, we’re already on the back foot. “Women are so good at pushing through and putting everyone else before us,” says Jen. “It can take a long time to finally make that doctors appointment”.
Some of the situations that Jen has seen women in, is heartbreaking. They’re completely spent and at their wit’s end.
“They’ll have been pushing through, doing a whole day’s work, then coming home and crashing – they get the kids dinner then go to sleep at 6pm and wake up 12, 13 or 14 hours later and repeat it all. Or they come home and their partner has to take over, because they need to go to bed at 5pm and sleep through until the late morning. And they’re being told that there isn’t anything wrong with them!”
Another issue with diagnosing long Covid is that is a diagnosis based on elimination. There’s no exact marker for it, so instead all other causes must be ruled out. With such a long list of possible symptoms, that can be a long process.
To make it trickier, that process is handled by GPs, who, I’m sure we’re all aware are currently carrying a gigantic burden. They have huge patient loads, with stretched funding and limited time, meaning many GPs simply don’t have the capacity to undertake training to identify and treat long Covid. It also costs to visit your GP, which puts it out of reach for many women who are struggling with keeping their family afloat during the cost-of-living crisis. If their symptoms are so bad that they end up in hospital, it’s not seen as a long-term event, and not reported or treated as long Covid.
Many people are also under the impression that there’s not a lot that can be done about long Covid, but that’s where Jen – and other cardio-respiratory physios step in. A physio who is targeting your lungs and respiratory system, through breathing exercises can be transformative. You’re not going to get overnight results, but you will make gains over time. A physio can also support assessment and management strategies for POTS and PEM, including return to work and childcare.
If you’re reading this story and it’s really resonating with you, about your own recent health or the wellbeing of someone who is close to you, Jen encourages you to see your GP and bring up long Covid and start the ball rolling.
Her other advice is to take it as easy as you’re able to. “If you need a nap, go nap,” she says. “If you need to cut back on activities because your body is telling you it can’t do it, that’s okay – rest. Embrace resting and putting yourself first, it’s really important.”
She says its important what kind of rest you’re investing your time in – it has to be truly relaxing for you and something that means you really switch off. “Scrolling doesn’t help,” she warns. “You’ve got that blue light and the chemical response to the scrolling. Don’t do it.”
Jen also recommends looking at how different situations affect you – maybe you find you are particularly lethargic after working on a computer for long stretches. Or maybe your symptoms ramp up after you’ve been socialising with friends. “it’s okay to dial back on those,” says Jen. “These are short-term sacrifices for long-term gain.”
And, she would of course advise you to talk to your GP about getting a referral to a cardio respiratory physiotherapist.
“There are fantastic ones within Te Whatu Ora who understand breathing exercises and long Covid. For those who can afford it, there are physiotherapists in the private sector too.”