Invisible No More: Rising long covid-19 cases help "spoonie" concerns become mainstream

 

 By: Terry Wilcox

According to a recent study in the New England Journal of Medicine, between 10 and 30 percent of Americans who contracted Covid-19 will experience debilitating long Covid symptoms, such as fatigue, joint pain, shortness of breath, brain fog, sleep problems, headache, dizziness, depression, and loss of smell and taste.

The study's authors conservatively estimate that 15 million Americans, whose average age is 40, will suffer from these invisible long Covid ailments in the months and years ahead. They conclude: "Long Covid is likely to cast a long shadow on our health care system and economic recovery.

"With this vast influx of chronic disease patients, “spoon theory" is more relevant than ever. Coined by lupus patient Christine Miserandino in 2003, spoon theory describes the predicament facing patients suffering from rare conditions that are regularly ignored or downplayed by broader society, including the medical community.

Christine uses spoons as a metaphor to describe the toll these painful conditions take on patients, who are regularly told by their family, friends, colleagues, and even doctors.

 

"You don't look sick."

 

A collection of spoons is used to represent the amount of energy these patients must perform their daily activities. While healthy people generally have near-limitless energy to complete their daily work, chores, hobbies, and family commitments, patients with rare and chronic diseases only have a finite amount—a limited number of spoons. Each task they perform expends a unit of energy, represented by handing over one of their spoons.

When their spoons run out, these patients cannot do additional activities without threatening the next day's supply—i.e., without burning out and flaring up their conditions. In addition to long Covid and lupus, invisible illnesses can include fibromyalgia, migraines, rheumatoid arthritis, back pain, and numerous autoimmune disorders. These patients are referred to as "spoonies."

Patients with these invisible illnesses often have difficulty receiving appropriate care. "Some of the disregard can be attributed to the fact that long Covid has disproportionately affected women," write the NEJM authors in a sentiment that can be expanded to cover all spoonie conditions. "Our medical system has a long history of minimizing women's symptoms and dismissing or misdiagnosing their conditions as psychological.

Women of color with long Covid have been disbelieved and denied tests that their white counterparts have received." Consider the typical challenges spoonies face. Bianca from Wyoming was diagnosed with fibromyalgia in 2019 after almost a year and a half of chronic pain, fatigue, and brain fog.

Yet her doctor refused to give her specialist referrals until a psychiatrist confirmed that her symptoms were not psychological. Her doctor also denied her access to a pain clinic because he thought that she wasn't in enough pain to attend since she continued to work.

"Because my illnesses are invisible, I am often questioned, denied medical care, and gaslit by providers," says Bianca. "I appear young and in good shape, so it is difficult for medical providers to take me seriously when I explain how I am feeling."

Dianne from Connecticut suffers from migraines and has experienced the stigma spoonies often encounter. She explains how people frequently tell her, "You don't look sick" or "C'mon, it's just a headache." They downplay her symptoms by recommending that she take a couple of Advils or even simply drink more water. She has had significant difficulty explaining how her migraines are far more severe than headaches and not all in her head.

Minorities often have an even more difficult time accessing treatment for their invisible illnesses. For instance, Isabel Mavrides-Calderon from New York has faced significant bias from the medical establishment while trying to get treatment for her spinal injury. "I learned that doctors don't respond as positively to my immigrant mother with a Spanish accent or me, a young Latina girl, but they do respond to my white-passing father, a man."

It is difficult for healthy people to sympathize with the daily struggle facing those with invisible illnesses. Spoon theory helps explain the pain and burdens they encounter. As the number of spoonies is set to skyrocket with the nascent long Covid epidemic, now is the time for the healthcare community to commit to finally treating them appropriately.

Doing so can arm this growing patient population with more spoons to dramatically improve their daily lives.