When faced with the diagnosis of a chronic illness in the modern era, many people quickly turn to Facebook, Twitter, blogs, and other platforms to spread the news and share their innermost thoughts and concerns. Self-revelation has become the norm. A reluctance to talk about one's illness might be seen as quaint, possibly wayward, and perhaps even unhealthy. It may even seem old fashioned to celebrate the virtue of occasionally closing the door on self-revelation in a time of crisis and to recommend instead the sustaining power of reading a good book.

Let me admit to a bias. I am a lifelong reader and no stranger to the power of books to engage and console. However, as a historian, I recently worked on a project that prompted me to give this personal inclination more thoughtful consideration. The subject of my study was an 11-year-old girl who, in 1919, was diagnosed with what we now call type 1 diabetes, or insulin-dependent diabetes mellitus. Known at the time as “acute” diabetes, it was a death sentence and few people lived more than a few months after diagnosis. But this young girl, Elizabeth Evans Hughes, the daughter of a politically powerful American family, was given the latest treatment available.

No, it was not insulin—its discovery was still 3 years in the future. This innovation was a rigid diet known as “starvation therapy”. It had been recently developed by the physician Frederick M Allen and was used by him, Elliott Joslin, and other leading diabetic specialists of the time. The principle behind Allen's diet was simple: patients should only consume as much food as their bodies could efficiently metabolise, however little that was. Allen began treatment by having his patients eat nothing and then slowly added carbohydrates. When sugar appeared in the blood, a patient's tolerance level was established; he or she could now eat only enough to stay below it. Early death was still inevitable but Allen believed that if patients adhered to his diet they could extend their lives, relieve the distress of otherwise inevitable organ failure, and feel some sense of control over their lives. For people with “acute” diabetes, tolerance levels were extremely low. Elizabeth, for example, was only allowed to eat about 800 or fewer calories a day with usually one fasting day during each week when she could consume perhaps only 250 calories or nothing at all if a trace of sugar had shown in her daily urine test. Of course, this was not enough to sustain life. Elizabeth and other patients on Allen's diet wasted away, falling prey to a variety of infections to which they had no resistance. Not surprisingly, few people were able to stay on this diet, even if they had the desire to do so. But Elizabeth managed to stick rigidly to it and her story has a happy ending. She kept herself alive long enough to become one of the first recipients of insulin when it was first used in clinical trials for human beings in 1922. But how did she manage to live on this starvation diet for 3 long years? If she was sustained by faith, she never mentioned it in her many letters home. She was loved by her family and friends and that was certainly comforting. She took pleasure in nature and music and these were also important to her. But as hunger gnawed at her, she passed most of her waking hours immersed in a book.

Frederick M Allen Copyright © 2011 Images from the History of Medicine (NLM)

Scholars have wisely recognised that it is impossible to say exactly what any individual gets from reading. Historian Cathy Davidson notes that the best we can do is to establish a reader's “interpretive grid”, know something of his or her social, cultural, and intellectual world, to be able to ascertain what reading might provide. Elizabeth, before her diagnosis, had been a sporty child and a product of the best private schools New York and Washington DC could offer. She was raised in a household in which education and reading was valued. Her father, Charles Evans Hughes, former Governor of the State of New York, US Supreme Court Justice, and presidential candidate, had been born into modest circumstances and education—both self-directed and formal—had been his avenue to great success in the law and public life. Elizabeth's mother, Antoinette Carter Hughes, had also leaned heavily on the pleasures of reading to navigate her difficult childhood and remained an enthusiastic reader.

It is not surprising, then, that Elizabeth should turn to reading when she became too weak to go to school or go out much. It offered her obvious consolations. It passed the time and took her mind off her hunger and lack of energy. It also liberated her from what psychiatrist Arthur Kleinman has called the “oppressive iron cage” of chronic illness, which in Elizabeth's case also included the dehumanising regimentation of her diet and the constant monitoring of her body's processes and every gram of food consumed. She seems to have sought escape from both the prison of the treatment and the self-absorption it required.

However, the type of books she read and the pace at which she devoured them were surprising. We might expect someone so young to seek escape in adventure stories. Lucy Maud Montgomery's Anne of Green Gables or Francis Hodgson Burnett's The Secret Garden would have been natural choices at the time. But if Elizabeth had once enjoyed books like these, she did not turn to them in her medical crisis. She told her mother in a letter that she did not want to read “silly novels and baby stories that don't do you any good and that you forget immediately”. Neither did she seek a role model in the noble suffering of Beth March in Little Women or in living with grief from Katy in What Katy Did. Instead, she immersed herself in adult travel literature and nature writing. She lapped up the works of John Burroughs, William Henry Hudson, Gene Stratton Porter, and Joseph Conrad's called Tales of the South Seas at a voracious pace. She wanted to experience vicariously the delights of places they described. Apart from one brief flirtation with a Zane Grey western novel, picked up for light relief when her mother insisted she read Charles Dickens, she quickly put both aside and immersed herself again in accounts of faraway places.

Elizabeth's letters reveal how in travel literature and nature writing, she found a way to imagine a future for herself. She believed that she would one day see the places that she was reading about. No one had told her she was dying. Such frankness was rarely offered at the time to adults or children. Her physicians, Allen and Joslin, her attending nurse, and her parents were eager to have her comply with the diet and spoke about it with optimism. Elizabeth claimed later never to have realised her condition was fatal. And why might her future not include travel? Her illness had not kept her home. In 1921, when her father became US Secretary of State, her parents sent her with her nurse to Bermuda to escape the stress of Washington's social and political scene. She loved the 2-day ocean voyage to get there, exhausting as it was for her, and revelled in the beauty of the island. There would surely be other journeys to new lands in her future. She told her mother she longed to see “picturesque South Sea Islanders!” And she imagined her own future as a writer.

As she grew too weak to stand from a chair or walk without assistance, she joked that it would be a good career “for [writers] don't have to use their legs!” Elizabeth dreamed on, but those around her despaired. As she read her way through the Americas, India, and the South Sea Islands, her weight steadily declined. Before her illness, Elizabeth weighed about 34 kg, average for her age and height. 2 years later, in 1921, she weighed 25 kg. By the summer of 1922, she reached her nadir, 20·4 kg. Yet even then, she continued to imagine herself in the role of the writers she read. She used her savings to buy herself a writing desk and a portable typewriter and told her mother she needed the latter for “writing all my manuscripts and letters etc besides being lots of fun to work. Anyway authors always have one.”

Elizabeth Hughes and her mother in the summer of 1918 Copyright © 2011 The University of Toronto Library

Fortunately for Elizabeth, in August, 1922, insulin became available in clinical trials, and she was one of the first recipients. She went on to live a long and rich life before dying in 1981. Unlike many people with diabetes in the post-insulin world who feel the “oppressive cage” of chronic illness in the regimen of diet and insulin dependence, Elizabeth found insulin liberating. Brimming now with energy, she travelled extensively in the next decades, journeying to Europe and China. She never wrote a book but she put her writing skills in the service of the charitable boards on which she sat. And, of course, she read. A favourite memory her three children have is of her with a book in an armchair, in her son's words, “purring”. She never had any inclination to talk publicly about her diabetes or the wonders of insulin. After a brief time in the public eye as the most famous of the early recipients of the new drug, she kept silent. She gave permission for her letters from that time to become public only after her death. It was education, the foundation of reading pleasure, to which she devoted her considerable philanthropic energies. That reading has the power to nurture the spirit in a time of crisis is hardly a new thought. But as the pace of technology and communications quicken, and the pressures to be part of virtual communities builds, we perhaps need to be reminded that comfort and hope can lie in our imaginations.

Further reading Cox, 2009. Cox C The fight to survive: a young girl, diabetes and the discovery of insulin. Kaplan , New York Google Scholar Davidson, 1986. Davidson CN Revolution and the word: the rise of the novel in early America. Oxford University Press , New York Google Scholar Feudtner, 2003. Feudtner C Bittersweet: diabetes, insulin, and the transformation of illness. University of North Carolina Press , Chapel Hill Google Scholar Hughes. Hughes E. Letters. Elizabeth Hughes Papers. Thomas Fisher Rare Book Library, University of Toronto Google Scholar Kleinman, 1988. Kleinman A The illness narrative: suffering, healing and the human condition. Basic Books , New York Google Scholar