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BIOMEDICINE AND HEALTH : Clinical sciences

Great novelists have used literature as therapy

Illness does have someone who writes it

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At the beginning of the year, the novelist Henning Mankell revealed that he had been diagnosed with cancer. Almost immediately he decided that he would write about his illness in a Swedish newspaper.  Mankell is not alone, but one of many writers who have written about their illness. Apart from whatever they might bring to the table, a recent study claims that so-called “expressive writing” can help to reduce some of the symptoms suffered by oncology patients.

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Jesús Méndez | | March 22 2014 09:00

<p>PHOTO GALLERY.  Henning Mankell, writer diagnosed with cancer, would write periodically about his illness in a Swedish newspaper. / Maurizio Gambarini</p>

PHOTO GALLERY.  Henning Mankell, writer diagnosed with cancer, would write periodically about his illness in a Swedish newspaper. / Maurizio Gambarini

<p><strong>PHOTO GALLERY. </strong>Susan Sontag wrote <em><a href="" title="Illness as Metaphor" target="_blank">Illness as Metaphor</a></em>. / Boris Roessler</p>

PHOTO GALLERY. Susan Sontag wrote Illness as Metaphor. / Boris Roessler

<p><strong>PHOTO GALLERY</strong>. In 2010, Tony Judt, affected by ALS, published a chilling article entitled <a href="" target="_self"><em>Night</em></a> in which he detailed some of the symptoms with subjective precision. / EFE </p>

PHOTO GALLERY. In 2010, Tony Judt, affected by ALS, published a chilling article entitled Night in which he detailed some of the symptoms with subjective precision. / EFE 

<p><strong><strong>PHOTO GALLERY</strong></strong>. Though  Antonio Lobo Antunes denies it is autobiographical, his novel, <em>What Horses Are These that Make Shade on the Sea? </em>has a protagonist who is one Antonio Antunes, a patient in a hospital bed being treated for colon cancer. / <a href="" target="_blank">Wikipedia </a></p>

PHOTO GALLERY. Though  Antonio Lobo Antunes denies it is autobiographical, his novel, What Horses Are These that Make Shade on the Sea? has a protagonist who is one Antonio Antunes, a patient in a hospital bed being treated for colon cancer. / Wikipedia 

<p><strong><strong>PHOTO GALLERY</strong></strong>. Tony Blair with Christopher Hitchens, author of <em>Mortality</em>, which recounts his last months of esophagus cancer. / <a href="" target="_blank">Wikipedia </a></p>

PHOTO GALLERY. Tony Blair with Christopher Hitchens, author of Mortality, which recounts his last months of esophagus cancer. / Wikipedia 

<p><strong>PHOTO GALLERY.</strong> Anatole Broyard, literary critic with prostate cancer who did his own in <em>Intoxicated By My Illness: and Other Writings on Life and Death</em>, with a prologue by neurologist and writer Oliver Sacks. / <a href="" target="_blank">Wikipedia </a></p>

PHOTO GALLERY. Anatole Broyard, literary critic with prostate cancer who did his own in Intoxicated By My Illness: and Other Writings on Life and Death, with a prologue by neurologist and writer Oliver Sacks. / Wikipedia 

<p><strong><strong>PHOTO GALLERY</strong></strong>. Roberto Bolaño, the Chilean writer, posed a race against the clock to finish his novel <em>2666</em> while he awaited a liver transplant. / <a href="" target="_blank">UAM</a> </p>

PHOTO GALLERY. Roberto Bolaño, the Chilean writer, posed a race against the clock to finish his novel 2666 while he awaited a liver transplant. / UAM 

In January of 2014, the Swedish novelist Henning Mankell went to the office of an old well known surgeon.  He had been complaining for some time about what he thought was a painful herniated disc.  The next day, the tests proved his intuition wrong.  “I had a tumor on the back of my neck and another in my left lung,” he himself announced.  “The cancer could also have spread to other parts of my body”.

It is not an odd story.  Often the diagnosis of cancer is a sort of casual encounter with something with which one has been living for who knows how long.  Less common, though logical in this case, was his first reaction: “They had barely given me the news when my first impulse was already to write about it.”

And he is doing it.  Mankell decided that he would periodically publish a series of articles in the Swedish newspaper Göteborgs-Posten.  And he would do it “from the perspective of life, not from death”.  This last quotation is taken from the first columnIn the second, published in mid February, he speaks of anxiety, of hope, of the search for information.  Without euphemisms.

Among other things he states, “I am a child of the 1940’s and I think that everyone of my generation automatically associates cancer with death.  Even though I know, just like everyone else, that the cancer studies that have been conducted over the last 50 years have advanced unbelievably and that cancer is not synonymous with an inevitable end, the old belief no doubt remains somewhere within me.”

And he does not hold back with the metaphors.  “The first waiting period is over.  Now the counter-attack on my tumors will begin.  In military terms, the feeling is as if the cavalry has come out of the edge of the woods and is rushing towards the enemy that has invaded my body.”  Exactly the type of imagery already used by the American essayist Susan Sontag in Illness as Metaphor.  Sontag suffered three different types of cancer throughout her life and passed away from leukemia at 71 years old.

Sontag and Mankell, however, are not the only ones to write about illness.  And cancer is not the only illness to be written about.

Tony Judt and neurological disorders

Tony Judt, British historian and writer, was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 61.  ALS is a rare but devastating disease.  With the exception of but a few genetic cases, its origin is unknown and the few treatments available barely slow its progression.

As it progresses, the motor neurons, those responsible for voluntary movement including breathing, begin to deteriorate. Thought and sensitivity, however, are left intact.

Over the two years that he continued to live after the diagnosis, Judt managed to finish Thinking the Twentieth Century, a book of conversations with his colleague Timothy Snyder, Babelia’s book of the year.  In 2010, he published a chilling article entitled Night in which he detailed some of the symptoms with subjective precision. 

In it, one can read: “Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers.  (…)  It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory..”

The combination of paralysis, along with sensitivity and thought intact, makes the solution in his case to “scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased.”

Two years after the death of Judt, his wife revealed one of the motives of the publication of that article.  In addition to being a catharsis, the text was directed towards other sufferers of ALS with whom he had been maintaining correspondence.  Many of them were younger than he and did not have medical insurance.  It was an attempt to draw attention to the importance of applying a social policy that prioritized the human aspect over the economic one.  He attempted to use his public image.

But in no way do all of the cases of writing about illness have an ending like this one.

Manuel Baixauli, a thinking stone

Along the same spectrum of neurological pathologies can be found an autoimmune syndrome – the defenses themselves attack the body– known as Guillain-Barré syndrome

It causes a general weakness, like ALS, and can also affect sensitivity.

Though in some cases it leaves some after effects, the majority of patients that suffer from this syndrome recover after some time.

This is what happened to the writer and painter Manuel Baixauli, who suddenly began to feel a tingling while he was at the cinema.  What at first seemed like just a tickle ended up causing a paralysis that lasted for 42 days.

Though he made a full recovery, having been a “thinking stone” as he proclaimed himself to be, led him to write the novel La cinquena planta (The Fifth Storey), an allusion to the inaccessible storey of the sanatorium where he recovered.  The Valencian artist in this way referred to “those things that exist, but are not seen at a simple glance.”

Lobo Antunes and Bolaño’s races against the clock

Q.— You say that when you were diagnosed with cancer, what worried you most was finishing the book...

A.— Yes, and I told the surgeon to give me a few months to finish it before dying.  I was lucky and I was cured.

Antonio Lobo Antunes, a Portuguese writer (and previously doctor) is the one answering above.  The book that he referring to is Archipelago of Insomnia and the cancer, one of the colon that was diagnosed in the middle of the novel’s preparatory stages.  As with Mankell, his first reaction –most likely after some moments of assimilation– was to write, to keep writing.  The same as Roberto Bolaño, the Chilean writer who posed a race against the clock to finish his novel 2666 while he awaited a liver transplant.

Antunes was lucky, but he did not forget, because his next novel, What Horses Are These that Make Shade on the Sea?, though he denies it is autobiographical, has a protagonist who is one Antonio Antunes, a patient in a hospital bed being treated for colon cancer.  The need may be the same, but the forms differ from Mankell’s.

The Portuguese author resorts to a not-at-all condescending lyrical memory, playing with “shapes that renounce coming and going, overlapping, moving away, the word cancer and with the word cancer disjointed images, him in the dentist’s chair thinking of the sea and how the sand was shining before the gulls arrived” or, after the diagnosis:

—Do you want a week to think about it?

 Think about what? How to return home inside  a body which, though he knew, did not belong to him.  He looked at his hands and said:


And to what hands was he speaking?  To the doctor’s?  To his own?

For many writers, the need to write about their illness comes naturally.  After all, it is the instrument they have closest at hand.  “If I stop writing, I have nothing left,” Antunes came to say.

This is also how British writer and journalist Christopher Hitchens did it in his book Mortality, which recounts his last months of esophagus cancer.  Or Anatole Broyard, literary critic with prostate cancer who did his own in Intoxicated By My Illness: and Other Writings on Life and Death, with a prologue by neurologist and writer Oliver Sacks.

The therapeutic utility of writing

Jaume Martínez, psychooncologist at the hospital Vall d’Hebron in Barcelona, states to Sinc that “these types of initiatives are fantastic.  It is clear that their skills and professional experience make them inclined to seek out this form of expression and their works can serve as a model if the patient can relate to them.”  However, he also points out that “others prefer to live their illness more isolated.”  This begs the question of whether this same process can prove to be useful among all patients, even to those who do not write as a profession.

In a study involving 300 cancer patients, expressive writing improved their physical capacity

Writing about negative personal experiences seems to improve the physical and psychological health of those who practice it.  However, this benefit has been demonstrated in healthy individuals, not so much in patients such as those with cancer.  In the latter, the results are inconclusive.  The bulk of the work has been conducted with breast cancer patients and, even though some attribute certain benefits to it, there is no concrete evidence that confirms its utility. 

In March, however, published in the Journal of Clinical Oncology, one of the most important in the field of oncology, was the largest, most long-term study conducted to date.  Researchers from the Anderson Cancer Center in Texas proved the utility of the so-called “expressive writing” in nearly 300 patients of both sexes with kidney cancer.

Half of them were asked to write about everyday happenings about the disease with no emotional charge, such as dietary or sleep concerns.  The other half, with whom the expressive writing was tried, had to do it with profound thoughts: fears they had about the future, how the disease interfered with their lives, etc.

Four writing sessions of twenty minutes each were established and the results were evaluated after one and ten months.  For Lorenzo Cohen, leader of the research team that conducted the study, “It is surprising that so few sessions are sufficient, but it is not clear that increasing them would mean greater benefit.”

Jaume Martínez, psychooncologist, encourages patients who feel inclined to do so to write, “but they are not the majority”

It is thought that this type of writing can be used so that patients may order their emotions, thus contributing to the decrease of the intrusive thoughts and the reduction of stress and depression –the depression associated with a lesser life expectancy in cancer patients– as well as improving the function of the immune system.

When they evaluated the results after ten months, the expressive writing had not improved the symptoms of depression or the quality of sleep, but instead had in fact reduced the symptoms related to the cancer, improved physical capacity and appeared to reduce fatigue in participants in the sessions, something that had been observed in several previous studies.

When asked about the progression of his studies, Cohen revealed to Sinc that his group is now focused on “knowing for whom this type of treatment might be more effective: either for those with symptoms of depression, with a lesser capacity for emotional expression, or for those with a higher level of education.”  Additionally, they are in the process of examining data on the immune system and cortisol –a hormone related to stress.

This type of technique is not widespread in Spain.  Jaume Martínez himself does not use it in clinical practice, though he encourages writing for patients who feel inclined to do so.  “But they are not at all in the majority, but rather the exceptions.”

Blogs like Nacho Mirás’ for sharing experiences

Whatever the case, this protocol for writing may not strictly be the only valid one.  Many patients write about their illnesses on websites.  For Cohen, “this can be beneficial for several reasons; it is a way to share your thoughts and feelings and to establish a coherent history over time.  And because by writing it you can receive affection and support from the people with whom you communicate.”

“If what I write can be helpful to others in similar situations, I will make some sense of all this horror,” says Mirás

After all, “We are human beings,” he reminds us.  “The more connected we feel to others, the easier it is to go through difficult experiences.”

These initiatives are perhaps less widespread in Latin cultures, where according to Jaume Martínez there is a tendency towards silence and more “resistance to speaking and reading about difficulties”.

But there are notable exceptions.  One is Nacho Mirás, a journalist for La Voz de Galicia who was diagnosed with a brain tumor at the end of 2013.  Since then, perhaps because “who better to understand an oncology patient than another oncology patient?”, he writes occasionally in his blog, chronicling his illness.

As he himself says, “Telling about what I live and what I feel in my personal blog has been useful to me for putting my thoughts in order.”

Because “Today it’s me; tomorrow I hope it’s not you.  I have stage III anaplastic astrocytoma, no laughing matter.  I could die from this, but that’s not in my plans.  If what I write also helps others that are in similar circumstances, then I will make sense of all this horror.  It’s me who’s talking, as I live it, as I feel it.”

Geographical area: International
Source: SINC

Jesús Méndez

Physician, writer, science popularizer and researcher on epigenetics and cancer biology at the Bellvitge Biomedical Research Institute (Barcelona). 



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