VOL.69/2024.04

 

“Illness Narratives”
A Detailed Reflection of our Society

 

2022.02.14

 

The center of our body is not the heart.
It’s the spot we feel pain when we are sick.

 

This is a phrase from the poem I, Stand There written by Park No-Hae. In fact, we all get restless even when a small spinule is stuck under the fingernail. Needless to say, if we feel pain in some area of our body, that spot becomes the center of our body, getting all the focus. Every human being sometimes gets sick to a different degree. Even for someone who has never caught a cold, there must be a time they get sick due to perhaps aging, which is a natural process for our body. It is not a curse word, but all human beings have no choice but to go through sickness and healing, and through which, they gradually grow into a mature person. (could be harmed, of course.) In that process, the sickness, or disease, at the center of your life creates a story of its own kind that is often made into a book.

 

People who share the story of their illness

 

The so-called “illness narrative” can be found commonly around us. This may sound like “You know, in my day...” (a slang expression describing an older person saying "Back when I was young..."). However, middle-aged women used to take care of their parents-in-law, and devoted sons of an earlier age searched the mountains to find wild ginseng to save their parents who were at the crossroads of life and death. The illness narrative of an earlier age focused on what people sacrificed at that time. Meanwhile, the illness narrative of today centers around our own story, openly describing how we care for ourselves.
A great example is a book titled I Want to Die but I Also Want to Eat Tteokppokki (HEUN) by Baek Se-Hee, published in 2018. By containing conversations between a psychiatrist and the writer suffering from “bipolar disorder” characterized by periods of depression, the book helps raise public awareness of the “illness narrative.” The author says early in the book that what matters is not the degree of pain, but the state of living with the illness. Hallucinations and self-harm are not the only conditions that qualify as illnesses. Just as a mild cold hurts our body, so a mild depression hurts our mind.

 

 

Most people look fine on the surface. But, for whatever reason, many people are sick deep inside their hearts. More than a few people manage to live their lives exhausted by work and hurt in relationships. As it is everywhere else, saying that life is hurting me, especially mentally, is considered taboo because when you say that, people immediately look at you with some prejudice.
As such, those who are sick often become self-conscious. They are continuously nervous about what other people think about them and keep reproaching themselves, causing a vicious cycle. In such a reality, the author emphasizes that “We shouldn’t be someone who doesn’t cry, but someone who can cry when we want” because we can never reach happiness while pretending not to see the depression deep inside our hearts. Some people say that the book was successful because of its title, and the book was not evenly favorably reviewed. But after all, it is clear that I Want to Die but I Also Want to Eat Tteokppokki has opened up the possibility of illness narrative in our society.

 

 

I Come From a Land of Mental Illness (Banbi) was written by Lee Dan. As its subtitle, “A guide for those living with illness,” suggests, the book contains a concrete and detailed description of mental illness that the author suffered, and the disorder that has now become common. The author is diagnosed with bi-polar disorder that requires her to take medicine every day. Amid the suffering, she organized a self-help group where she would meet other patients while writing about mental disorders for years. Interestingly, the author doesn’t hesitate to use the term “mental illness” as much as the expression “mental disease,” both of which are often avoided among many patients. This is in contrast to other books of a similar subject where “illness of the mind,” a euphemism for mental illness, is often used. However, there is a reason why the author keeps using the term. That is because she wanted to focus on the state of being literally “ill” in the mind.
Unlike other diseases that, of course, take great courage for patients to reveal, the disease in our minds inevitably leads to negative prejudices in our society. In that sense, the author is genuinely courageous with the strong hope that patients in a similar situation, although of different aspects, would no longer withdraw and come out of the psychiatry clinic toward the world.

 

The social context of illness matters

 

The illness narrative is fragmenting into different branches. In one branch, books are being published that look more carefully at the social context of diseases. In fact, our society tends to emphasize the individual responsibility for health, attributing the cause of illness to individual failure to take care of his or her health. However, illness is a product of society. In that regard, a book worth noting is Crazy, Weird, Arrogant and Smart Women (East Asia) by non-fiction writer Hamina. As a patient diagnosed with a manic-depressive disorder, the author expands the scope for discussion on illness narrative, a subject mainly associated with individual environments and characteristics. At the core, there is “a male-dominated society” where women’s minds and bodies have long been disregarded. Depression, especially a woman suffering from it, has long been considered a patient subject to involuntary treatment and analysis. Hysterics or hysteria, which many people still associate the disease with women, has an origin that makes the association understandable.
According to ancient Egyptian records, hysteria was “a disease that comes with paralysis and physical disease mostly affecting women without the specific cause.” At that time, the disease was also described as a “starving womb.” Hysteria was studied by prominent figures like Jean-Martin Charcot, one of the precursors of scientific psychology, and Sigmund Freud, the founder of psychoanalysis. But, female patients were just treated as a subject of research. Until recently, few medicines dealt with women’s bodies and sufferings. There are several reasons. According to the book, the systems to diagnose, measure, and treat depression were heavily funded, and the prejudices among the white and men who regard themselves as experts and producers of knowledge led to a focus on research, rather than solid treatment.

 

 

Another book titled On the Way to a Proper Language of Pain (Graedobom) by Oh Hee-Seong draws attention for a similar reason. The author describes her life as “drifting off the border between the disabled and the able-bodied,” and there is a good reason. She has been suffering from degenerative arthritis of the hip joint, which is more commonly known as “Charcot-Marie-Tooth disease.” Also, she feels hesitant to open up to others about it, because of a widely held perception - “Only perseverance and silence are a virtue,” which was especially emphasized for women.
As the saying goes that misery loves company, the author would get comfort whenever meeting those suffering from similar pain, making her determined to write something by sharing the pain. However, before going about writing, she felt that it was more important to find “a proper language” that can express what she had felt, such as inconvenience, anger, and regret. Otherwise, her writing could be considered nothing more than “a noisy cry.” Unfortunately, some people are so rude to ask an impolite question such as “so, what are your symptoms?”
“While pain itself is an incredible burden to bear, explaining symptoms that no one can understand is also too harsh,” says the author. Instead, the author speaks calmly about the social meaning of her disease and the power of encouraging each other. Our society is sometimes cynical and other times hospitable, but we should keep in mind that there are always some people who manage to live a life amid their suffering.In recent years, other books including Empathy of a period (Planet B), Speaking Body (Munhakdongne), Whether you Admire or Hate (Little mountain), I Am Not Sorry That I Am Sick (Dongnyok), and Dance With Illness (Prunsoop) have been published. This means that illness narrative as a genre is apparently taking root.

 

Suffering individuals and society are reflections of our reality

 

The books mentioned so far have focused on the narrative of the person who suffers from the disease, looking at it from a social aspect from the perspective of individual suffering. On the other hand, a book titled Making Hope Out of Sorrow (East-Asia Publishing) by social epidemiologist Kim Seung-Sup addresses the societal perspective of diseases, along with the historical perspective. The book candidly describes how social elements like hatred, discrimination against job seekers, and employment instability would permeate our body, that is, how devastating such a social element is to our body. No disease can progress without any contact with social environments. In other words, all diseases require social remedies.
To reemphasize this, the cause of a disease inevitably has to do with society. As such, books with illness narratives can simply be categorized as psychological essays, but they are books with social implications. What is notable is that the authors of many books dealing with disease narratives are primarily women. We don’t need the explanation behind this. Women have had to endure all kinds of discrimination ever since human history began, and the resulting pain has left its trace in a woman’s body.

 

 

It is also worth noting that one or two foreign books have helped the illness narrative take its place in our society. One is a book titled Illness As Its Metaphor by Susan Sontag, who became a genre unto herself after overcoming two cancers. In the book, she is wary of the tendency that being ill works as “a metaphorical trap that turns her into something ugly.” Still, the tendency to stigmatize diseases such as tuberculosis, smallpox, and AIDS is haunting our society, promoting fear and alienation. While it was not written by a female author, the book Reflections on Illness by Arthur W. Frank cannot be left out in discussions of illness narrative.

 

 

A documentary film “Sewing Sisters,” premiered in January, and centers around the stories of middle-aged ladies working in a Peace Market, a large textile market in the 1970s, who were called “sida (meaning ‘servant’)” or “gongsun-i (meaning ‘factory girl’).” At that time, they worked on sewing machines in the market for over 15 hours, from 8 am to 11 pm. These women, who were as young as 12 and at most 16 years old, had no choice but to go to work just because they were women and poor. A document from A Critical Biography of Jeon Tae-Il describes that “growing young girls were suffering due to harsh working conditions, and as if it wasn’t bad enough to be sick, their employers accused them of laziness and even ruthlessly fired them when the sickness got worse without providing treatment.” The film “Sewing Sisters” can be categorized as an illness narrative of a different dimension. We should not forget that the society we live in is not a place that belongs to us, but a place where we have to live together.

 

 

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Written by Jang Dong-Suk (Publication Reviewer and Head of Culture Business Division at the Book City Culture Foundation)