Long Covid Is a Feminist Issue

Some voices get ignored.

Image: by Jem Yoshioka, CC

One common manifestation of ableism is a denial that a disability exists. Family may refuse to believe (or accommodate) food allergies. Strangers may see someone walking a few steps and decide that they therefore are faking when they use a wheelchair.

You could see this kind of ablesplaining as a relative of mansplaining. Marginalized people are viewed as epistemically incompetent; they have no status or credibility, and therefore cannot be trusted to speak to or understand their own experiences or lives. And if women aren’t believed, and disabled people aren’t believed, it follows that weaponized disbelief is compounded for women with disabilities; doctors, family, strangers, and employers can all embrace the opportunity to mansplain and ablesplain at the same time.

This seems to be what has happened with public, government, and social responses to Long Covid. The disease, which is similar to, and may be related to, Chronic Fatigue Syndrome, disproportionately affects women. Partially as a result it lacks what some researchers have referred to as “social currency”, which is to say that society is unwilling to accept the disease as genuine, or to give credibility to those who suffer from it. The intersection of ableism and sexism creates a void of reporting, of diagnosis, and of care. Those with the disease exist in an abyss of credibility; they can speak, but they can’t be believed.

You’re not really tired, you just need some mansplaining

The low social currency of Long Covid is a successor, and arguably an offshoot, of the low social currency of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS.) CFS is a disabling illness which manifests as “overwhelming fatigue that is not improved by rest,” according to the CDC. It affects about 1 million individuals in the US.

People who suffer from CFS may have difficulty concentrating or thinking; even simple tasks, like taking a shower or preparing a meal, can make them so tired they can’t function and have to rest. People with CFS often can’t work and have trouble caring for themselves. Symptoms can last for years.

Researchers do not know what causes CFS, though there is some evidence that it may be triggered by viral infections. Doctors also have no treatment for the disease; care mostly involves managing symptoms and trying to help patients work within their limits so they don’t over-exert themselves.

Still, researchers do have some information about the condition. They know, for example, that CFS affects women more frequently, and more severely, than it effects men. Women are two to four times as likely as men to be diagnosed with CFS. Two-thirds of women with CFS in one recent study reported co-occurring conditions such as irritable bowel syndrome and clinical depression compared to only 52.7% of men. Women also reported more symptoms, such as brain fog, muscle pain, or unrefreshing sleep.  

Most CFS sufferers are women; the origins of the disease are still unknown. Those two facts together mean that many doctors simply do not believe their (mostly female) patients when they describe the symptoms and impact of CFS.

Doctors often tell patients that they can overcome their exhaustion by adopting a more positive attitude or by trying to exercise. They may prescribe cognitive behavior therapy and graded exercise therapy, both of which have no recorded benefits, and the second of which actually has been shown to make patients worse. George Monbiot at the Guardian called doctor’s psychologizing of CFS “the greatest medical scandal of the 21^st century.”

According to Monbiot, “Patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is ‘psychosocial’: driven by patients’ beliefs and behaviour.” In other words, doctors have insisted, despite the evidence, that CFS is not a disease, but is instead a non-crisis of neurotic, malingering women who just need to smile and get out of the house more.

Long Covid and the contraction of mass fatigue

Long Covid is defined as Covid symptoms which persist for at least three months after the initial infection. This covers a wide range of symptoms and experiences; for instance, Covid can cause longterm and even permanent damage to the lungs. People who still have reduced lung capacity months or years after their initial Covid infection would under many definitions be considered to have Long Covid.

Often, though, Long Covid is used more narrowly to refer to people who experience CFS—or something very like CFS—after contracting Covid. Doctors estimate that about 17% of patients who contract Covid go on to experience Long Covid. Again, Long Covid rates vary by gender; 21.8% of cis women experience Long Covid compared to only 13.5% of cis men. Trans people have even higher rates, at 26.3%.

Long Covid manifests much like CFS; sufferers experience exhaustion, brain fog, difficulty concentrating, and lack the energy to perform even everyday tasks. Researchers discovered that in people suffering from Long Covid, mitochondria were not working properly, preventing muscles from accessing oxygen in the blood. There was also a possible autoimmune response damaging muscle tissue, and patients developed microclots.

Though more research needs to be done, the initial findings suggest that Long Covid is a very serious illness which can profoundly affect patients’ ability to exert themselves. That explains why many people with Long Covid experience post-exertional malaise, or profound fatigue after any type of exercise. It also suggests that trying to treat Long Covid, or CFS, with exercise could be extremely dangerous and cause patients more harm.

Choosing to contract a debilitating illness rather than listening to women

Currently the US Department of Health and Human Services estimates that there are between 7.7 million and 23 million people suffering with Long Covid. It’s been referred to as a “silent pandemic.” That’s not because people with Long Covid aren’t talking about it. It’s because medical professionals and policymakers don’t want to listen. Despite the fact that Long Covid affects millions, and despite the fact that it is a debilitating and terrifying condition, doctors and politicians have been glacially slow to move to slow spread or to invest in research for treatment.

Like the Trump administration before it, the Biden administration has been eager to put all things Covid behind it. That means largely abandoning the effort to reduce Covid spread—and thus an abandonment of the effort to reduce the incidence of Long Covid.  

Biden and the CDC have ended free Covid testing programs, rolled back recommendations for masking in health care facilities, and changed guidelines so those who test positive for Covid no longer have to isolate for five days. The clear message is that Covid is no longer a danger, and that people who contract the disease no longer need to worry about major or long term consequences.  In short, for those suffering from Long Covid, it’s as good as saying they don’t exist.

It's difficult to know for sure whether the government would be more concerned about Long Covid, or more interested in preventing it and addressing it, if sufferers were disproportionately men rather than disproportionately women.

What’s undeniable, though, is that ableism and sexism are intertwined, and you can see evidence of both in the way the right in particular has responded to Covid. Sociologist Ladan Rahbari, for example, pointed out that many wellness influencers and health gurus responded to Covid by pushing the idea that people could  self-regulate through quack cures and lifestyle changes. Rahbari contrasts this with “feminist notions of care and solidarity.” An obvious corollary is that the mania for self-regulation reflects anxious masculine ideas about control, independence and purity, as well as ableist ideas that people who become ill are to blame for their own disability and supposed weakness.  

Along those lines, sociologist Katarzyna Wojnicka notes that in the early pandemic men were three times as likely to require intensive treatment because of Covid infection. This was likely because men were less likely to consult with doctors, less likely to wash their hands, less likely to wear masks, and less likely to get vaccinated. Vaccination in particular, with its connotations of penetration and invasion, seems almost designed to trigger masculine panic. According to psychologist Ryon McDermott, men who embrace traditional masculinity avoid protective health behaviors “because it’s somehow seen as being feminine, or being weak.”

The right, which self-styles itself as the party of traditional patriarchy, has radicalized around opposition to Covid prevention as a kind of desperate manly battle against the hated nanny state. Democrats have been more ambivalent, but they also don’t want to admit to the womanly weakness of being vulnerable to a deadly pandemic, and so they’ve mostly acquiesced to GOP pushback.

To be womanly and/or disabled is seen as a character flaw. And so rather than admit that anyone can become disabled and need care, we’ve mostly shut down our public health efforts, choosing to ignore Long Covid sufferers rather than admit that, with a bit of bad luck, the virus could turn us into them.

We can do better than this

There have been some efforts to raise awareness of and address Long Covid. Patient Led Research, an organization of scientists with Long Covid, have been at the forefront of research efforts. The organization Long Covid Moonshot is encouraging voters to contact representatives, especially Republican representatives to support more funding (more details here). In line with that goal, Senator Bernie Sanders, chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, has proposed $10 billion to research Long Covid and fast track treatment trials. The funds would obviously be a major boon; debate on the bill could also be helpful in increasing public awareness.

Our national failure to address Long Covid is also an important, pressing reminder that we badly undermine public health when we delegitimize the voices of disabled people and the voices of women. Insisting that marginalized people are deluded, weak, or irrelevant prevents us from listening to or acting on vital information that makes everyone safer and healthier. Women’s health is currently a major political flashpoint, and a core of Democratic messaging and strategy. But people on every part of the political spectrum still tend to dismiss women’s experiences of disability. In doing so they put women, and everyone else, at risk.

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