Learning About Long COVID From Other "Invisible" Illnesses

by Alexandra Brewis and Amber Wutich

Long COVID is now formally recognized as a medical condition with over 200 possible symptoms. Spread across multiple organ systems, these include effects on the heart, lungs, immune system, reproductive system, and brain. One of the most common and debilitating effects is extreme and unavoidable fatigue.

There is a profound need to better understand the experience of those living with long COVID, especially while there are no clear and effective medical treatments available. What will best help people manage their illness? How can employers, friends, and family best help? Some of the best clues come from listening carefully to those who have struggled for decades in a similar fatigued limbo—those living with ME/CFS. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is characterized by debilitating exhaustion after any sort of exertion that is not fixed by rest.

Richard was a family friend growing up in New Zealand, widely identified as a teen by his sporting talent. My younger brothers often commented on his much-admired cricketing skills. Today he looks back on his six decades of life and can better recognize his illness started when he was in high school. At the time, he imagined everyone struggled as he did, finding it hard to get out of bed in the morning for school, and collapsing from exhaustion from a part-time job. After final exams, it would take weeks of rest to recover. Friends and family noticed. But, he explains, “without a diagnosis, I wasn’t allowed to be sick—and so had to soldier on.”

His symptoms of what was later diagnosed as ME/CFS worsened in his twenties. A bout of influenza amplified his physical struggle, and forced him to give up his new career in law. In the years that followed, he would struggle to get back to any type of formal work. And it wasn’t until he was fully bedridden that he even got a medical diagnosis. In the meantime, he had to contend with the common conversation: “I'm ill and can't work.” “What's wrong with you?” “I have ME.”

The stigma of fatigue

People in many different places have also reported how the lack of a clear diagnostic test for ME/CFS is part of the challenge of living with it; meaning others can very easily trivialize the fatigue as “in their heads” or a psychological issue. Like Richard, many report trying to hide their symptoms by pushing themselves to work despite extreme pain and exhaustion as a means to avoid the negative judgment. As he puts it, he felt it necessary “to prove I was not a malingerer.’”

Richard also describes the eventual diagnosis of ME as a “poisoned chalice,” especially when he must resort to calling it "chronic fatigue syndrome," a label he hates but that is also more familiar to others than ME. He says, “once the word ‘fatigue’ has been uttered, they think they know it all, doctor, friend, and stranger alike. Weakness of character begets weakness of body is how their thinking apparently goes.”

Studies with those living with ME have identified a jeopardized social identity – the sense of failure and disconnection that comes from not being a “producer”—is central to the struggle to manage. As one Canadian in a support group explained many years ago: “I see myself as a different sort of person now and whereas in my life I’d always been, I was always a human doing. And now I’m a human being and that's the only way I can describe it.” Another noted: "You have to find some other way to define yourself that isn’t dependent on your ability to produce."

Why does the term "fatigue" trigger such a negative reaction from others, and one so painful to those with conditions that undermine their ability to work as expected like Richard? Medical anthropologists have been chipping away at this question around ME and similar conditions for years. The consistent finding is what becomes classified as a serious problem in societies reflects “what matters most” within them. And in many places, the ability to work is considered central to being defined as a useful and valued adult. We are expected to be able to hold down jobs and, especially in modern urban life, failure to do so is interpreted as just that: failure. This means that those living with extreme fatigue are not only managing their symptoms, but also the unattainable expectations of others. They are judged through the lens of a powerful stigma that attaches all too easily to what is already an incredibly difficult disease to live with.

The importance of being believed

What does this research into the experience of living with ME suggest for those struggling to manage long COVID? One of the key points that has emerged in studies of ME/CFS is that people living with these “invisible” illnesses need to be believed. This comes first, even before any medical or other support for managing their illnesses.

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Online forums appear to be helping, in the sense it is now easier for people to locate and form communities with others who believe them: mostly those living with the same condition. These connections, along with the support of others in their daily lives who “believe them,” have proven vital to those with ME/CFS finding ways to live better.

As medical professionals and friends, families, and employers interact with those diagnosed with the long COVID, these lessons explain the need to treat symptoms as “real." Those with ME/CFS find it no surprise at all that those with post-COVID complications are often finding it hard to be heard and seen. In fact, the term “long COVID” and the push for formal recognition emerged first not from medical experts, but from social media and other online discussions of those feeling ignored and discounted, who were seeking answers about their crushing fatigue.