"The topics we remain silent about are addressed in literature. This is where taboo thoughts and feelings are given a voice."

So says Nora Simonhjell, professor at the University of Agder (UiA).

She is the editor of the article collection I skyggen av sykdom In the shadow of illness), alongside Linda Nesby and Ingri Løkholm Ramberg from UiT The Arctic University of Norway, Tromsø.

The book is the first Nordic collection of literary studies that explores those living in the shadow of illness in both fiction and film.

It contains 15 articles from Norwegian, Swedish and Danish researchers. In addition, Olaug Nilsen, who has written several books about this experience and received the Fritt Ord Prize among others, contributes an essay from an author's perspective.

"We now view stories about these experiences as a distinct genre," says Simonhjell.

In Norwegian, this genre is known as 'pårørendefortellinger', narratives about those affected by illness, but terms like pathography (illness narrative) and curography (care narrative) are also used.

Affected parties in the spotlight

Those closely connected to someone with an illness have long been present in literature but often in the background. Today, they more frequently take centre stage.

Simonhjell points to the wave of books with autobiographical elements as a significant reason.

"Karl Ove Knausgård's novel Spring is an example. Books like this have made it more common to write from personal experiences, also as someone affected by another person's illness," says Simonhjell.

This has led to new perspectives, both in literature and research.

"When art shifts perspectives, research follows suit. New insights give us new ways to read even older literature," says Simonhjell.

In their introduction, the editors note that these themes can also be found in Henrik Ibsen's Ghosts (1881).

However, newer stories in poetry, novels and film scripts are the main focus of this book.

The common thread is the depiction of life close to illness or persons with reduced abilities, seen through the eyes of those who stand by them.

From patients to those affected

Since the late 1990s, a significant international research field on literature and illness has emerged, primarily focusing on illness narratives and patients themselves.

Now, interest also extends to those closely connected to patients. These narratives explore the relationship between patients and affected parties as well as the various roles and responsibilities they may undertake.

"The affected party is expected to support and assist, but they can also feel powerless, exhausted or reluctant. It is often these conflicting emotions that literature captures," says Simonhjell.

Many of these books address moral dilemmas. Who has the right to tell someone else's story? Can you tell about a sick parent, a child with a disability or a partner with dementia?

"The narrator's position is vulnerable. The affected party demands space in a narrative where typically it is the patient who gets sympathy. It is new that literature grants legitimacy to this position," says Simonhjell.

A number of prominent Scandinavian authors write books where this theme is very evident, Simonhjell points out. This includes authors like Helle Helle and Naja Marie Aidt from Denmark, and Sara Stridsberg and Nobel Prize-winning author Tomas Tranströmer from Sweden.

From Norway, examples are Cecilie Enger, Rune Christiansen and Hanne Ørstavik. Enger's Mors gaver (My mother's gifts, 2013) is perhaps the most well-known.

"Rune Christiansen writes both novels and poetry that focus on affected parties and themes of care. Like Enger, he explores difficulties related to dementia and the collective aspects of this illness," Simonhjell says.

She refers to the poem 'Sad is the way I feel', where Rune Christiansen writes about a son visiting his mother:

She asks me who I am. I answer that I am her son.
One of those moments where it of course is beyond reach.
She says I've grown. Who are you? she repeats.

(From the poetry book Jeg går i sorg (I walk in grief), 2022. [Unofficial translation]).

"The poem shows how literary texts can distill a situation and, with very simple devices, make clear what's at stake and highlight the interpersonal consequences of the relationship between affected parties and patient," says Simonhjell.

Simonhjell says literature can evoke recognition in readers and also challenge them.

"This literature acknowledges the difficult feelings many close relations may have. At the same time, it can make us think anew. It humanizes both patients and their loved ones, making them more than just their roles."

Many of these books, according to Simonhjell, have broadened the general understanding of being closely connected to someone experiencing illness or dying. She does not hesitate to describe this literature as both politically and socially beneficial.

"The literature and research about it are not about trying to be useful. It is more about acknowledging that literature is already useful, as a source of knowledge, as an aid in identity exploration and as a starting point for reflection," she says.

Today, there is moreover more room for seeing literature in interplay with society. However, this does not imply that analyses of language and aesthetics are set aside.

"Literary studies still focus on close readings. We examine form and literary devices. It is the text itself and the way it is constructed that offer us insights into close relations and society," says Simonhjell.

Discussions about health and care are currently shaping public discourse. In these discussions, literature has long played a role, according to the researcher.

"It has been said that close relations are a cornerstone of the welfare society, and these experiences are now being brought to light in literature," says Simonhjell.

The government's strategy document for 2021-2025, 'Vi – de pårørende' (Norwegian only), points in the same direction.

Simonhjell hopes the new collection of articles will be read beyond academic circles.

"This is about lived experiences. About ordinary people. It concerns us all," she says.

Linda Nesby, Ingri L. Ramberg og Nora Simonhjell (eds.), I skyggen av sykdom. Skandinaviske pårørendefortellinger i vår tid, open access.

The work on the book is connected to the interdisciplinary research group Health, Art and Society (HAS), which focuses on humanistic health and care research as well as medical humanities.