Korea’s first Eating Disorder Awareness Week giving life to small miracles

Korea’s first Eating Disorder Awareness Week giving life to small miracles

In February this year, I took unpaid leave from work to organize Korea’s first Eating Disorders Awareness Week (EDAW). Afterwards, I went straight back to work, but my employer was restructuring his business. This meant I could take a month’s paid rest before starting a new job. This period felt strange and surreal, like a dreamy vacuum. While aware that we’d successfully finished something great, I felt too exhausted to feel it was real.

Now, despite sometimes feeling empty, as if “the party is over”, in retrospect I am surprised at the many miraculous things that have happened to those of us who organised the EDAW. There are many things to write. I will tell the most recent things first:

A Table for Two

On July 16, I watched the indie documentary film A Table for Two (I’d seen it twice already at the Seoul Independent Film Festival last winter). It was Sunday and the last day of the Incheon Women’s Film Festival. A bunch of us flocked to the port city west of the peninsula — me, Surah, Sunmin, and two more friends whom I met during the EDAW. Surah, a professor from the United States, was visiting Korea during her summer vacation. The Gen Xer, a generation older than the rest of us, is author of the booklet, The Gender Politics of Dieting, produced from her master’s thesis and published in 2000. At that time, I was a young, anxious, Strum und Drang reader.

Sunmin was in the audience, gaunt and pale, at two sessions of our EDAW and we met there for the first time. Now she is pregnant and has gotten healthier after just several months’ of “Supervised Table” meal support therapy. She has been the bravest one among us.

So, each of us took an hour-and-more subway ride to Incheon, arriving at the indie film theatre, the venue for the A Table for Two screening and the special talk session. We met Chaeyong and her mother, Sangok Park, an alternative school vice principal and former hardcore pro-democracy activist. The exceptional mother and daughter were the heroines of A Table for Two, directed by Boram Kim. Chaeyoung, with her new short, light-yellow hair, wore a black and white striped one-piece dress, looking tall and chic. She greeted us with five free tickets she had arranged for us.

Meanwhile, Sangok asked if I stayed well, right after being hugged by me. I answered “Yes”, and introduced each of us to her, proclaiming, “All of us are also from other inpatient wards!” Chaeyoung had been hospitalised when she was quite young and the film A Table for Two was partly about her experience.

The failed and forgotten business model of an inpatient eating disorders program

In November 2001, I was hospitalized as the second patient at B Eating Disorders Inpatient Clinic, the first of its kind in Korea, freshly opened in a quiet and affluent neighbourhood in Seoul. The clinic was located on the upper floors of another private psychiatric clinic building.

Opening a new psychiatric inpatient clinic in the middle of the neighbourhood was almost impossible, partly due to the predictable NIMBY (not in my backyard) problem. However, the senior alumnus of this ambitious eating disorder program moved out of his family home on the upper floors of his clinic building, allowing his junior alumnus, Dr K, to open an inpatient facility—a ground-breaking version of a clinic as a home-away-from-home. Dr K was one of several young Korean psychiatrists who had been trained at the Maudsley Hospital in the UK around the same time.

The ambitious inpatient clinic of Dr K closed its door after about five years, according to Ms Ahn, a practising outpatient meal support therapist with 20 years’ experience. We had met when I was admitted to the short-lived inpatient clinic – at that time she was a nurse, and she was my favourite among the shift nurses there.

The hospital where Chaeyoung was hospitalized was Inje University Seoul Paik Hospital. This 82-year-old general hospital, where Prof. Youl Ri Kim worked for a long time, will be permanently closed soon due to mounting financial losses. Chaeyoung was hospitalized there in the summer of 2007, when she was 15 years old.

Dr L was also among the Maudsley members like Dr K and Prof. Kim. Dr L was principal psychiatrist at the Inje Paik for a long time until departing to open his private eating disorders clinic N. This N clinic had its own version of a homey inpatient facility.

All three of these inpatient programs specializing in eating disorders treatment are no longer open.

The truth lies in the ‘roughly known, fear-tinged, hidden things’ and in ‘deep diving into it to fully understand’

I’ve met many people since our EDAW in February this year.  Many plans, discussions, opinions, and epiphanies have been shared. I met Ms Ahn personally, outside her clinic, for the first time. We met at the far eastern part of Seoul, an unfamiliar neighbourhood to me, where Ms Ahn teaches nursing students at a small, private nurse academy twice a week. She looked younger than at the clinic where she usually wears something like a warm, light coloured knit cardigan. Now in leather jacket and jeans, walking side by side with me on the streets, she was like my friend instead of my former nurse and meal support therapist.

After finishing our early dinner at a franchise salad cafe, I asked Ms Ahn a hard question — about what I’ve long been curious of but didn’t dare to ask — about a suicide incident at the inpatient clinic many years ago. I wanted to know what circumstances she and other nurses had worked under, day and night, to care for us there. Finally, I could hear the stories directly from her — about her frustration as a nurse, unable to properly function at the neither-proper-hospital-nor-home environment, the problems with untrained peer nurses, and how she had to amend the situation alone when notified of the tragic incident on a peaceful Saturday when she was off duty.

Everyone’s story counts – patients, parents, nurses, doctors, researchers

And when I visited Prof. Youl Ri Kim for the first time since the EDAW, I learnt about her long-time collaborator, a former charge nurse of inpatient wards in a big university hospital, who was dedicated to caring for eating disorder patients. According to Prof. Kim, this experienced woman had already moved out of Seoul to live at a country house in the north of Seoul. To appear at work every working day, she was driving herself for hours from her home to Seoul. Prof. Kim looked sad and sorry when she said, “But I must let her rest and enjoy her life now. I can’t let her drive such a long distance every day, especially considering her old age…she deserves much better for her exceptional expertise but even so she willingly continues to come to work.…”

And I met the parents of young eating disorder patients, several existing and successful patient advocacy groups including the Korean Society of Type 1 Diabetes and its brave president, Ms Kim, and several researchers from the Medical Humanities community. I also met several talented editors from different publishers, an ex-executive from a big insurance company (to discuss what insurance would be necessary to cover treatments for eating disorders), a practising psychoanalyst who had worked years ago at the N inpatient eating disorders clinic and, of course, many journalists, too.

We gave interviews, wrote columns, or voluntarily equipped them with lots of relevant resources. Barbara appeared in an investigative TV program to talk about her experience of the entertainment industry as a newly debuted singer, Jinsol conversed with the host and a feminist critic on a radio show about her own thesis on the narratives of eating disorder sufferers, Yein participated in a Zoom interview for a young women journalists’ podcast, and Yuna, in spite of being in later weeks of pregnancy, gave an interview for NHK, a Japanese broadcasting channel.

We were like guerillas, scattered, independent, but operating perfectly, separately, as if in close coordination.

I gave several interviews and, as we all did, had to argue with or persuade the interviewers who were typically ignorant about the problems of eating disorders. What made me most annoyed and sometimes even furious was their surprisingly naive, “otherizing” attitude towards the sufferers, and their unabashed sensationalism. I even contributed a column titled Does the media’s reports about ‘Pro-Ana’ serve to promote it?  to MindPost, the alternative news platform. Sometimes I lost patience and fought like Jean d’Arc. I couldn’t tolerate stories that were triggering and misleading for the young and vulnerable ones.

So, I’ve spent the months after the EDAW this fully, as an activist and writer by identity and an office worker for a living.

“I’m curious why you feel sorry for your daughter.” “It’s not just typical mother’s guilt…”

Right after the screening ended, the staff set the chairs on the stage for the following talk session with the director Boram Kim, Chaeyoung and Sangok. There was an air of expectation in the engaged audience, many still in tears. I noticed that the three of them were speaking somewhat differently from when their talk session at the Seoul Independent Film Festival in November of last year. Then, Sangok had seemed still confused about the narrative of the final edited version of the film. Chaeyoung had been a little bit shy but also defiant, trying to adjust herself as best as she could.

But now, they were like different, evolved versions of themselves. Sangok became more eloquent and looked more comfortable doing her part. Chaeyoung was different, too, but I can’t find proper words to describe the nuanced change. In general, I was surprised at how greatly the themes and perspectives they deliberately touched were expanded to the societal and systemic level.

When a woman in the audience, who introduced herself as a person recovering from anorexia, asked this awkward question — “You were talking about social issues, but I think eating disorders are more personal things. I heard that anorexia is closely related to the characteristic trait of perfectionism, and I agree to it. I’m also a very perfectionistic person and I’m trying to change this part of my personality. What do you think about it? By what percentage do you think, Chaeyoung, in your case, that perfectionism caused your anorexia?”

I was secretly infuriated from the seat, but Chaeyoung was calm and confident. She was super wise with her reply, referring to the different standards the society assigns to women and men:

Many young women are perfectionists, but they don’t think themselves perfect enough yet. We need to ask, what makes them so harsh to themselves even when they do well nine times out of10 but fail just once?

I wanted to applaud her.

And surprising us all, Sunmin stood from her seat and asked a question to Sangok:

“In the film, you said you’re sorry for Chaeyoung. I’ve suffered from eating disorders for a long time and had troubles with my mother, too, throughout all those years. But then, I got pregnant and I’m preparing to be a mother myself. So, I was curious…of your thoughts. I’m curious exactly why you feel sorry for her. Because it’s rather difficult for me to figure out.”

Sangok answered calmly, choosing her words carefully.

Maybe my answer is not what you expected, but I want to say it’s not just typical mother’s guilt. Of course, I’m sorry for her, more personally, for not being a caring enough mother, but my regret goes beyond that. I‘m sorry for her that though I was such an ardent activist for such a long time, I couldn’t make a safer and just world for her where I would not need to warn her again and again that she should be careful not to be in danger. I’m sorry that I failed to make her live fully in this world without the need to fight for it. I’m really sorry for that.

I saw the staff pass tissues to Chaeyoung. And Surah, next to me, was silently wiping tears behind her spectacles. Later, she told me that Sangok reminded her of her seniors of a generation.

From generation to generation, and until Sunmin’s baby grows to be 15

Surah was among the first cohort enrolled at the first-in-nation graduate program in women’s studies at Ewha Women’s University in the 1990s. Her adviser was a medical anthropologist, so she could write about her experiences of dieting and stay at one of the notorious “fasting centres”, flourishing at that time, for her master’s thesis. The Gender Politics of Dieting was published to popular acclaim, but Sarah gave up her work there, left Korea for the US, and changed her major to social work.

During the EDAW, I was surprised at her Instagram username. She was one of the most active, online participants in our sessions, and her username is none other than surah_hahn. The name was familiar to me, and I realized it was the name of the author I had cherished during my freshman year. The EDAW reunited us, and this was just one of the many miracles our EDAW had planted seeds for. Surah thanked us, and I thanked her for writing her book.

One day, we were sitting around a table at a terrace cafe — Surah, Sunmin, and me. It was a cool, breezy summer evening. I told them how wholeheartedly June has supported our efforts and about her latest email mentioning that, after many years of advocacy, perceptions about the expertise by lived experience have changed from being ignored to gaining positive recognition in her home country of Australia. I asked:

“How long can we persist to achieve this change in Korea? Is it even possible?”

At some point during our conversation, Sunmin talked about something like, “Fifteen years from now, when my baby becomes a junior high school student…”

“Your baby becomes a junior high school student?” I shouted, almost jumping from my chair.

That time frame was feasible. That time frame was tangible. That timeframe gave us a context to think differently. Until Sunmin’s baby becomes 15 years old! If we can make this world better for the 15-year-old boy or girl! If we can successfully advocate for better access to healthcare for people with eating disorder symptoms, how great this will be!

“It makes sense now,” I said. All three of us agreed. We all thought, “This is a feasible project we can work together for. And most of all, we are very willing to make it happen.”

We took the first step with our inaugural EDAW. More steps will come!