In 2012, doctoral student Hosanna Krienke was looking for topics for her dissertation on British literature. A recovering cancer patient, she was struck by the recurring theme of sickness and recuperation in 19th-century novels. Although Krienke had recently finished immunotherapy treatment, she still felt like a patient. Everyone around her behaved like it was all over, “and I couldn’t express why I didn’t feel the same."
Why was it, Krienke wondered, that characters in famous Victorian novels—from Charles Dickens’s Bleak House to Francis Burnett’s The Secret Garden—felt free to spend so much time getting better? And why is it that nowadays people are expected to recuperate quickly after serious illness or injury?
The answer lay in changing attitudes to recovery, she found. Before the advent of modern medical care in the 20th century people were vulnerable to a raft of infectious diseases from typhoid to tuberculosis. Those who were fortunate enough to survive infection were expected to take a long time to recover fully, Krienke found. This process of restoration—a stage between acute illness and full health—was a major focus of physicians and families. For centuries, the care of convalescents came with its own set of theories and rules, intended to prevent relapse and integrate patients back into normal life.
But with medical advancements, tolerance for long recovery waned. “Modern medicine is uncomfortable dealing with things where we don’t have a quick fix,” says Lancelot Pinto, consultant pulmonologist at the P.D. Hinduja Hospital and Medical Research Center in Mumbai. “When there were no cures, patients were allowed to live out the natural history of the disease. For diseases that have a cure now, there is no leeway, it’s presumed that if you are cured microbiologically, if the tests come back normal, you don’t deserve any more rest … and that maybe the symptoms are imagined or psychological in some way.”
Now, those older ideas about recovery could provide important perspective for the pandemic, say researchers like Krienke, who studies literary and medical history, as millions of patients who’ve had COVID-19 find themselves frustrated by the persistence of symptoms for weeks or months beyond their infection. “All kinds of illnesses have lingering effects, but culturally, we don’t have a way to talk about it,” says Krienke, now an assistant lecturer at the University of Wyoming. “I think convalescence is a helpful paradigm for the present moment.”
Why we need recovery time
The pandemic offers an opportunity to reconsider the patient’s experience, suggests Sally Sheard, historian and executive dean of the Institute of Population Health at the University of Liverpool, as well as the kind of time we are willing to allow for recuperation. “One of the clearest messages from my work on convalescence is that you cannot rush the process,” she says. In the United Kingdom, some COVID-19 patients were discharged too fast, to free up beds, while others were delayed in hospital too long because they had no help at home, she says, adding, “so maybe we need halfway or recovery homes,” not unlike older convalescent homes.
The pandemic has brought new attention to long-term recovery as scientists gain a growing understanding of long COVID-19—a condition in which symptoms linger long after the initial diagnosis and illness. Many hospitals around the world have set up post-acute care clinics for these patients, for instance. Pinto suggests that once a drug is found for COVID-19, “the office will expect you back in five days,” but also acknowledges the opportunity for advancing understanding of long-term mechanisms in virus illnesses. Post-viral symptoms have been documented in diseases from SARS to dengue but remain poorly studied.
“Dengue patients have fatigue for several weeks after infection, and chikungunya patients can have pain for months,” Pinto points out, “But we don’t talk about long dengue or long chikungunya.”
Hospitals have not “had this raw number of people with a common illness in a century,” notes Ann Parker, pulmonologist and co-director of Johns Hopkins Post-Acute COVID-19 team. In the absence of evidence-based interventions for long COVID-19—interventions that longer studies might provide—the clinic treats patients symptomatically, drawing especially from post-intensive-care rehabilitation. Treatment can include “supportive” services such as physical therapy and counselling for symptoms like fatigue and anxiety, says Parker. “We do see that patients tend to improve,” she adds, although without randomized trials comparing different interventions, “I can't say that there's a demonstrable difference in outcomes.” In some cases, she adds, they have to help patients “adjust to a new normal.”
Early in the pandemic, many clinics put patients with persistent fatigue, the most common symptom, on exercise regimes as part of standard rehabilitation. But in August, a multidisciplinary consensus statement from the American Academy of Physical Medicine and Rehabilitation recommended individualized programs and advised patients to “pay attention to their body” and “pace” their activity—not unlike 19th century prescriptions for convalescence.
Pacing is important because many patients experience “post-exertional malaise,” in which a spurt of activity leads to worsened fatigue, says Alba Miranda Azola, co-director of Johns Hopkins’ Post-Acute COVID-19 Program and a co-author on the statement. “We have found that patients with post-viral fatigue that push through and enter a crash cycle have overall functional decline.” Cognitive tasks can also produce a crash, says William Brode, medical director of the Post-COVID-19 Program at University of Texas, Austin. He’s seen students laid out for three days after the stress of a term-paper deadline. “And they may have not even left the dorm room.”
Experts don’t fully understand how exercise triggers fatigue after an infection—some hypothesize that the immune system overreacts, causing inflammation, or that there are changes to mitochondria that power the cells in the body. It’s also not clear why pacing activity works. The lack of precise answers has been hard for patients, especially the young and active, say Hopkins’ Parker. In the absence of targeted therapeutics, adds Brode, “it’s a cultural shift of going back to the basics, of dealing with rehabilitation that is slow.”
The ancient origins of convalescence
Slow is the historical norm. Today, convalescent care is often associated with 19th-century European tuberculosis sanatoria immortalized in novels like Thomas Mann’s The Magic Mountain. But historians say the concept has older origins. The word “convalesce” dates to the late 15th century, and derives from the Latin convalescere, a combination of com, meaning “together,” and valescere, “to grow strong.” The English word convalescent appears in a 1656 dictionary, but was often used interchangeably with phrases such as “the recoverer” and “the weak party,” according to Hannah Newton, co-director of the Centre for Health Humanities at the University of Reading and author of a 2018 book on recovery from illness in early modern England.
The concept of convalescence is derived from Greek medical traditions, and in particular the ideas of Galen, a third-century physician and philosopher who influenced medical theory and practice in Europe and the Middle East until the mid-17th century. Galen developed Hippocrates’ idea of illness as an imbalance of temperaments, and suggested the body existed in one of three states: healthy, sick, and neutral. This last category was considered an intermediate state that was “neither sick nor sound,” writes Newton. It included newborn babies, new mothers, the infirm elderly—and convalescents. Acceptance of the “neutral” state suggests that early modern doctors saw health as “not just the absence of disease but the presence of strength.”
Therapeutic intentions in this era were distinct for each state, says Newton. Early modern treatments sought to preserve the healthy, cure the sick, and avert relapse and restore strength in convalescents, the last a field of medicine known as “analeptics.” Physicians observed after-effects that would be familiar to us today—fatigue, poor memory, hair loss, anxiety—and prescribed remedies revolving around lifestyle. Patients were advised to eat nutritious and easily digestible food, increase exertion and exposure to outside air slowly, and get plenty of sleep; convalescents were allowed to nap during the day. Anxiety was also seen as an impediment to recovery, says Newton, and families and friends were advised to help cheer up patients.
These ideas continued into the 18th century. But it was not until the 19th century that convalescence really took off as a discrete medical practice, suggests Liverpool’s Sheard. Until then, recovery would have mainly been at home, she notes, or, if you were a wealthy person in the 18th century, a trip to spa towns like England’s Bath to drink supposedly healing spring waters. What changed in the 19th century, says Sheard, was the rise of hospitals in the mid-to-late 1800s, which led to the growth of specialized convalescent homes, many of them funded by charities for the working class, across the U.K., Europe, and the United States, usually in the countryside or by the sea.
The rise of hospitals
The need for such homes was touted by no less than nursing pioneer Florence Nightingale. “No patient ought ever to stay a day longer in hospital than is absolutely essential for medical or surgical treatment,” she wrote in her 1859 tract, Notes on Hospitals. “What, then, is to be done with those who are not yet fit for work-a-day life? Every hospital should have its convalescent branch, and every county its convalescent home.”
Nightingale set out rules for the design of these homes, suggesting that the ideal would be a string of cottages in the country or by the sea. “Some convalescents will want entire rest; and this, with fresh air and good food, will be the main element of their recovery,” wrote Nightingale. “Others will be able to walk and yet not able to use their arms to do household work.”
These rest stays could last anywhere between a week to months. “Should, however, the convalescence be tedious and lingering,” wrote Nightingale, “the patient is never discharged, however long the period may be.”
Convalescent culture wasn’t just limited to seaside homes, it extended into books, pamphlets, and stories of recovery in magazines, Krienke says. “Victorian doctors complained that they would treat and discharge a patient, knowing that the person would just disappear into the city, facing all the same stresses of poverty, malnutrition, and hard labor that had initially made them sick,” she says. “Convalescent care seemed like a way to break the cycle.”
Advances in modern medicine and the decline of recovery
The convalescent home trend seems to have peaked in Britain between World War I and II. By then, the foundations had been laid for its decline. The sanitation reforms of the 19th century reduced the spread of infectious diseases, as did the discovery of vaccines. The development of antibiotics, and diagnostic, surgical, and rehabilitation techniques led to improvements in the duration and outcome of illness.
Economic changes after World War II drove further shifts in healthcare, shows Sheard. In the U.K., the creation of the National Health Service in 1948, and its financial stresses, contributed to the demise of specialized convalescent homes. In the U.S., insurance led to pressures on civilian medical leave. Shorter hospital stays shifted secondary convalescence out of sight of the medical system, and hid its economic costs, says Sheard. Once the science of recovery was established, attitudes to rest were shaped by an increasing social focus on productivity, she says. Recovery also came to be seen largely in physical terms.
COVID-19 now offers an opportunity to re-examine the science of convalescence.
In their clinics, Austin’s Brode and Hopkins’ Azola educate patients with fatigue in energy management techniques, borrowed in part from chronic fatigue syndrome. Traditionally, “if you break your ankle, [the approach is] pain is gain, let’s go, let’s get the function back,” Brode says, adding, “We’re doing the opposite of that here. … it’s about finding where that wall is and then backing down and resting. I tell patients, respect the wall.”
Whether patients can afford to take more time off or work reduced hours is another matter. Advocates for long COVID-19 patients like U.K.’s Fiona Lowenstein have called for greater disability benefits and sick leave.
For Krienke, learning about Victorian convalescence helped her adjust to the pace of her cancer recovery. “Because of 20th century advances in medicalized rehabilitation, we tend to think of recovery as a kind of work. You have to push yourself to feel better,” she notes. “For me, discovering even the word ‘convalescence’ helped me understand what was happening to me both physically and psychologically,” says Krienke. “Long recovery does not have to mean failure. It can be a slow, but beneficial process.”