Long Covid: Why Recovering From Covid-19 Is a Feminist Issue

Lauren Clark
·15-min read
Photo credit: Ana Davila - Getty Images
Photo credit: Ana Davila - Getty Images

From Women's Health

Photo credit: Ana Davila - Getty Images
Photo credit: Ana Davila - Getty Images

Neither gender is immune to Covid-19 - but early research indicates women are more likely to still be suffering from the virus months later. WH asks what this means for the way the long Covid is being treated...

On April 13th 2020 Sophie Wilson thought she was going to die. Just days after a crippling headache set in and she lost her sense of taste and smell, the 39-year-old woke suddenly at 3am to find herself sweating, faint and struggling to breathe. Catching her grey reflection in the mirror, she dialled 999.

‘I left my front door open and staggered back to bed, unable to stand up,’ she recalls. Finding her just outside the low-oxygen danger zone, paramedics left her at home - ‘suspected Covid-19’ written on her notes. She survived, but it was just the beginning of months of hell.

Days later, after being rushed to hospital with all the apparent symptoms of a heart attack, a doctor told her it was just stress, and that she needed to get on with her life. Heeding his advice, she spent the following day at her laptop running her communications business, breaking to do some gentle yoga - only to be left bedridden for a week with paralysing fatigue.

In the months that followed, Sophie’s daily routine was unrecognisable; gone were the morning runs down to Brighton seafront for a swim. Instead, she relied on friends to drop round groceries or push her in the wheelchair that, on bad days, she needed to get around. When she recounted her experience to her GP, listing over 20 debilitating and unfamiliar symptoms - including stabbing chest pains and brain fog - he diagnosed 'post viral fatigue', admitting he had no idea if or when she would get better. Other doctors she saw suggested anxiety.

Frustrated and afraid, she went online – and it was there, among the stories of other women, that she finally found a home for what she was experiencing in the two words that have come to define her life in the months since.

Long Covid has a list of symptoms that’s as perplexing as it is lengthy; from extreme fatigue, breathing difficulties and heart palpitations to neurological issues like loss of memory and concentration. They vary in intensity and severity; the only constant that they persist for weeks or months after infection of Covid-19 - a virus that we were told was supposed to feel like a fortnight’s flu, or kill you.

Exactly how many people are living in this nightmarish in-between is unknown (more on that later), but early studies suggest that women are disproportionately affected. A Trinity College Dublin paper published in September found that, despite making up just over half of participants in the study of patients recovering after being hospitalised with Covid-19, women accounted for two-thirds of those with persistent fatigue. Shortly after, King's College London researchers, using data from the COVID Symptom Study app, discovered that one in 10 people remain ill for over a month after symptoms first emerge, and one in 20 after eight weeks, with twice as many women suffering as men.

So why does long Covid have a predominantly female face? And what does this mean for the women whose lives have been levelled by this virus?

Hidden pandemic

They’re hard questions to answer, especially as scientists don’t yet know what they’re dealing with. The term ‘long Covid’ was coined by an Italian sufferer, Dr Elisa Perego; it wasn’t long after she used the term to describe her symptoms on Twitter last May that #LongCovid went viral, with hoards of others sharing their stories. That the condition emerged from anecdotal reports led to scepticism in the medical community, with some arguing these symptoms were unsurprising for someone recovering from a nasty respiratory virus.

But, before long, leading medics - including top US infectious diseases expert Dr Anthony Fauci - acknowledged the symptoms extend well beyond what is expected of any regular post-viral syndrome. In July, the government announced funding for a year-long UK-wide study into why some Covid sufferers experience lingering symptoms, spearheaded by the University of Leicester. However, given the variability in sufferers’ symptoms - from those unable to smell their morning coffee, right through to others struggling to go for a walk - there's no clear line of investigation. Researchers are currently looking at everything from the respiratory system to the brain. Compounding confusion, in October, aNational Institute for Health Research report suggested long Covid may be four different conditions.

As to why it’s disproportionately affecting women? That picture is even blurrier. ‘It may be caused by differences in men and women’s immune systems,’ says Professor Tim Spector, who co-led the KCL study. He believes the virus seems to behave like an autoimmune disease - where the body's immune system mistakenly attacks and destroys healthy body tissue.

Professor Spector's research also identified that most female sufferers are between the ages of 50 and 60, incidentally the age group at which levels of the female hormone, oestrogen - vital for the immune system - start to plummet as they enter the menopause. Dr Louise Newson, a GP specialising in the menopause, points out that women are similarly reporting their worst long Covid symptoms right before their period - also when oestrogen levels are lowest. She has teamed up with Professor Spector's team to start investigating the possible role of female hormones.

Help-less

But while theories about long Covid circulate within the upper echelons of scientific research, in GP surgeries, confusion is rife. While a third of doctors told the British Medical Association that they’d encountered long Covid in practice, when WH submitted a Freedom of Information request to 84 GP surgeries in Manchester (which was, at one point, one of the worst-affected areas in terms of cases) late last year to find out the number of long Covid cases they'd seen, only four could give us a definitive answer by rifling through patient notes. (Even within that tiny data set, the majority of sufferers were female.)

Since long Covid is not a recognised illness, with no definitive definition or diagnostic criteria, the NHS told us late last year that it didn’t yet have a code created for EMIS - the IT system for GPs in the UK - that could be inputted into a surgery's confidential records to bring up a total number (as they could for, say, diabetes). And with medical research unable to pinpoint exactly what long Covid is doctors are struggling to help these patients.

Lucy Onyango, a 28-year-old financial crime analyst from London - who first caught Covid in March - sought help from her GP when symptoms still lingered after six months. Brain fog meant concentrating during work Zoom meetings was a constant struggle, while doing the laundry sent her to bed exhausted. In September, just 30 minutes of yoga left her with crippling chest pain. 'My doctor was the first to mention "long Covid" - she was sympathetic, which I appreciated, but had no real advice,' she recalls, after blood tests came back normal.

‘We’re learning on the job about a condition, at the same time as the stress of an increased workload from the pandemic, with little extra support and lots of uncertainties,’ explains Dr Punam Krishan, a Glasgow-based GP, pointing out how disheartened medics are when they are unable to help sufferers get better. ‘I see how frustrated patients are when test results fail to provide a conclusive diagnosis – and it’s understandable.’

For women like Amy Durant, a 31-year-old book editor from Surrey, frustration is the least of it. She caught Covid last March, and after a fortnight of feeling unwell, she thought she was recovering when the breathlessness, brain fog and unrelenting tiredness returned with a vengeance. ‘Most days, I’m unable to leave the house where I live with my partner - sometimes not even my room; even cooking and reading are out of the question,’ she explains.

Besides losing her former life - satisfying working days editing fiction, long runs - her experience has been worsened by the sense she’s living in limbo. She recalls coming off the phone with her GP in tears after being refused referrals for cardiology and neurology, despite her doctor being unable to diagnose the reasons for her crippling fatigue, chest pain, dizziness and cognitive impairment. After eight months of follow-up calls, she was told they couldn’t do any more to help her, ‘even though I’m so limited by my illness that I'm considering buying a wheelchair'.

Mind the gap

Most shocking to Amy was how quickly doctors blamed physical symptoms on her mental health (with one GP prescribing an antidepressant) - and countless long Covid sufferers interviewed for this piece have experienced the same. Professor Felicity Callard, a human geographer at the University of Glasgow and long Covid sufferer, believes her history of anxiety and depression led a GP to assume the debilitating fatigue and brain fog was likely psychological effects. ‘If you’ve received mental health treatment previously, when you show up with other symptoms, it’s often more likely that those symptoms will be viewed through a psychiatric lens,’ she explains, of the phenomenon known as diagnostic overshadowing.

Research has linked long Covid and mental health issues - the University of Oxford found that one in every 17 people who have suffered from Covid-19 could be diagnosed with anxiety, depression or insomnia for the first time. But it's crucial to emphasise that it's most likely the former is causing the latter - and not the reverse. ‘If you have this disease for months, it’s understandable you will feel depressed,' says Professor Spector. 'These physical symptoms are not imaginary.'

And yet, influential voices continue to suggest that thousands have gone from fit to bed-bound because of pandemic-induced anxiety. The male director of a leading university genetics institute told The Daily Telegraph: ‘What I’d like, without dismissing anyone’s suffering...is slightly less hysteria.’

Female medics with long Covid have criticised the health service's lack of will to properly investigate what may be happening to patients, something that journalist Maya Dusenbery - who’s extensively researched the gender health gap for her book Doing Harm - believes is simply history repeating itself. ‘For centuries women have been told their symptoms are “all in their heads”, and the stereotype that women aren’t very good judges at what’s going on in their bodies has been baked into medical knowledge ’ she argues.

That word ‘hysteria’, Dusenbery explains, was an ancient medical diagnosis that by the early 20th century was applied to liberally to anything women experienced that baffled (mostly male) doctors (including desire for sex and getting the vote) and, she argues, its legacy remains in the way that women’s symptoms that can’t be explained easily, are routinely dismissed as ‘medically unexplained symptoms’.

Multiple studies have highlighted the consequences of this mentality - ranging from large-scale female overdiagnosis of depression in the 1990s, to the present-day statistic that women wait an average of 16 minutes longer to receive pain medication than men in hospital. Compounding this disconnect between doctor and female patient further is the fact that, as with other illnesses mostly affecting women, like fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), many of the symptoms of long Covid are invisible; the commonest being fatigue – not sleep-deprived tiredness, but an exhaustion that reverberates to the bone.

Speaking of CFS/ME, many long Covid sufferers now meet the diagnostic criteria for the condition, which affects four times as many women as men. After the first known outbreak cropped up in the 1950s at the Royal Free Hospital in London, when an unknown viral infection caused prolonged symptoms in 300 (predominantly female) nurses and other staff, it was branded ‘hysteria’ and written off as psychological (sensing a theme?). It didn’t receive medical recognition until the 1980s, and sufferers have had to fight for it to be taken seriously in the decades since. As recently as November, the National Institute for Care Excellence (NICE) removed two controversial, debunked 'treatments' from its recommendations - graded exercise therapy and cognitive behavioural therapy.

The parallels don’t end there; specialists have argued that Covid-19 could trigger a second pandemic of CFS/ME - not much of a reach given that research found 40% of those recovering from SARS were suffering with chronic fatigue three years after the 2003 outbreak. ‘If well-funded research had begun into CFS/ ME half a century ago, we’d be in a very different situation now with long Covid,’ argues Dr Ben Marsh, a consultant paediatrician who, due to CFS/ME has been unable to work for three years and describes himself as a ‘very un-useful house-husband’ to his breadwinner wife. Without that research on CFS/ME, he explains, there’s little robust evidence upon which doctors could build an effective framework for tackling long Covid.

The long tale

While the health service is understandably fatigued by the pandemic, eminently qualified critics are arguing that it should - and needs to - do better. This starts with recognition of long Covid as a medical condition. ‘Until we have a solid understanding of long Covid, and ways of objectively measuring it, women risk not being believed when reporting their symptoms,’ says Dusenbury.

Dr Nisreen Alwan, associate professor in public health at the University of Southampton, who’s suffered long Covid symptoms since April, agrees. ‘If we’re not measuring it, we don’t know how common it is, and then we’re not using it to inform our response to the pandemic.’ In December, the Office For National Statistics estimated that 186,000 people in England could currently be suffering, with some suggesting that the latest 'third wave' of Covid-19 could be generating 4,000 new long Covid cases a day. Dr Alwan notes that while such classification can take time, both testing and vaccines have moved rapidly. This isn't just about the future of treatment, she adds, but about providing relief to sufferers for whom family, friends and employers are still unable to understand why they haven’t recovered, and giving them access to financial support, like sick pay.

A key factor that separates long Covid from previous hidden health conditions, which might aid prompt progress, is that hundreds of healthcare workers are still too unwell to return to the frontline; a BMA survey found that almost 30% of those who had tested positive had been left with fatigue.

NHS England have announced a £10m investment in research as well as 81 post-Covid clinics. And in December, guidelines published by NICE, its Scottish counterpart and the Royal College of GPs - which finally listed 28 common symptoms, and finally listed a code for GPs to use - stated that hospitalised patients would get a long Covid check after six weeks.

While it sounds promising, 90% of those suffering from long Covid weren’t hospitalised, and many clinics are refusing GP referrals from them. Similarly, it’s unclear how exactly they will help, given the lack of knowledge into the condition. There’s still a sense from the experts WH spoke to for this piece that nobody wants to make conclusions about long Covid before the science has caught up.

But, if you’re a sufferer, this is stolen time. In October, Amy decided to sign herself off from the company she co-owns. ‘As an editor, I use my brain all the time, but now I’m finding that I can’t hold a conversation or spell words, so I can’t trust myself to run my business,’ she shares.

As for Sophie, a combination of being too unwell to generate a stable income - with government financial support failing to cover half her mortgage - she was forced to move in with her parents: ‘I need to work but I have no idea when I’ll be well again.’ Dr Alwan echoes her worries: ‘Having children to support is an added anxiety for me - will I one day be too ill to work and pay our mortgage?’

These are difficult questions; ones that current data indicates women are more likely to be asking. Considered in the context of a pandemic has set gender equality progress back by an estimated 50 years - women have lost jobs at higher rates, and the burden of childcare and housework has seen one in four in professional fields cut their hours or quit – the outlook looks bleak.

And yet, like every woman’s struggle in history, it’s through the mobilisation of those suffering that change will be forced. The first shoots of long Covid people-power sprouted in the US in April with the Body Politic Covid-19 Support Group, which now has more than 100,000 members - including a group of researchers who went on to create the first-of-its-kind Patient Led Research For Covid-19 project, which has now teamed up with UCL. The following month, in response to the viral hashtag #LongCovid, Claire Hastie, a Birmingham-based single mum, created the Long Covid Support Group on Facebook - which now has over 34,000 members, three-quarters of whom are female - as a ‘virtual call to arms’. On January 14th 2021, Layla Moran, the MP for Oxford West, secured the first debate in the House of Commons on long Covid. They won’t be keeping quiet about this, and nor will we.

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