Lived experience must lead change: eating disorders, systemic silence, and a layperson’s resolve

Lived experience must lead change: eating disorders, systemic silence, and a layperson’s resolve

Professor Kim’s reply had arrived in my inbox the previous evening, but I couldn’t bring myself to open it right away. When I opened it the next morning at my desk, I felt relieved. Prof. Kim wrote:

It feels like [the eating disorders field is] several decades behind compared to the treatment of other mental health issues. Honestly, I don’t even know what to say… It seems that it would be difficult for professionals themselves to even get started. I wonder if it might be helpful to look to the struggles and advocacy (solidarity) activities of people with mental disabilities for reference. Although there is the limitation of small numbers, in the end, it seems that framing the issue around patients and their rights is the only viable approach. For that to happen, organising and movement-building among those directly affected (including families) would likely be necessary. If you need, I would be glad to meet and discuss this with you.

Professor Chang-yup Kim, who kindly spoke at EDAW 2025 at my invitation, is a respected public health scholar soon to retire from Seoul National University. Since the 1990s, he has had a long, firm career as a government policymaker and advisor in Korea. I first spoke with him about a year ago. This small, thin man with silver hair joked humbly about having grown up in Korea’s conservative Daegu-Gyeongbuk region.

Prof. Kim admitted he was unfamiliar with eating disorders—about the realities of ED care in Korea. Despite his unfamiliarity, he has remained a hopeful figure for those of us with lived experience, as the founder of the People’s Health Institute (PHI), a progressive nonprofit research institute, and as an uncommon scholar who continually and thoroughly examines himself.

Last year, I attended Prof. Kim’s online PHI lecture series titled “The Myth of ‘Healthcare Reform’: Realities, Limits, and Prospects.” These lectures were not simply academic presentations but reflected Prof. Kim’s lifelong commitment to critically interrogating the contradictions and limitations of healthcare reform narratives in Korea.

At that time, Korea was experiencing a nationwide doctors’ strike after the government announced plans to increase medical school quotas—a reform intended to address severe regional disparities in healthcare access and shortages in essential medical fields.

In his lecture, Prof. Kim asked:

“What kind of healthcare reform should we be striving for?”

He argued that before we can answer this, we must first clarify what “healthcare reform” means within our society. The government, medical professionals, and various social groups all hold different visions, making the debate messy and easily co-opted. Yet, he emphasised, precisely because this issue is so closely tied to every citizen’s health, it is our responsibility to persistently question and redefine what genuine reform should look like, beyond surface-level policy debates.

I was struck by Prof. Kim’s intellectual openness and by his willingness to cite thinkers like Mark Fisher and Fredric Jameson, quoting from Capitalist Realism and The Political Unconscious to frame the structural forces constraining our imaginations about change.

It was invigorating to witness a scholar of his stature challenging the inevitability of the current system, describing it as a “quasi-apocalyptic” acceptance that capitalism is the only realistically viable alternative, and recognising how repressed hopes accumulate as a political unconscious within the routines of everyday life, surfacing in moments of rupture.

Yet, despite Prof. Kim’s critical stance, I hesitated to trust him fully. While he firmly critiqued the structural failures of the healthcare system, he often appeared cautious about directly criticising doctors as a professional class.

I agreed that systemic failures cannot be blamed solely on individuals, but I felt he had not yet fully recognised the professional deterioration within the medical and psychiatric fields in Korea—something I and many others have argued is an occupational and class issue, not just a systemic one.

That was why I hesitated before opening Prof. Kim’s email that morning, unsure whether he would truly understand the urgency and anger I carried in sharing the stories of people with eating disorders in Korea. When I read his response, it offered a quiet affirmation: that the initiative for change must come from us, those with lived experience, and that this is the only possible path forward.

The doctors’ strike and Korea’s medical hierarchy

In many countries, expanding medical school quotas would be celebrated as progress toward equity and access. In Korea, however, the announcement triggered an unprecedented shutdown of medical schools and hospitals.

Doctors walked out of clinics, and medical students staged collective boycotts, refusing to attend classes or clinical training. Students who quietly returned to classes were bullied in online communities and group chats.

Most astonishingly, parents of these “precious children” held public demonstrations on their behalf, worried not about public health, but about their children’s future salaries and job security.

This strike exposed the deeply entrenched hierarchy within Korean society, where doctors are treated as an unquestioned elite class.

Their authority is rarely challenged, and they often shape healthcare narratives and policies to serve their interests while silencing citizen-led critique and reform.

I experienced this medical hierarchy firsthand. About eight years ago, I was invited to speak on a popular podcast about mental health hosted by two young male psychiatrist-influencers. As instructed, I prepared questions I hoped to ask them, aiming to bring a patient perspective into public conversation.

During recording, one of the psychiatrists mistakenly read my question aloud, thinking it was his own script, and the other tried to stop him, but I encouraged them to continue.

My question was about the relationship between eating disorders, OCD, and addiction—issues deeply relevant for many of us with EDs. I had expected them to share meaningful insights as professionals or at least engage in thoughtful discussion. Instead, they responded with what they seemed to believe was sufficient proof of their expertise:

“Well, yes, it’s reported that eating disorders are related to OCD and addiction…”

That was it. What I had expected was a deeper scientific explanation—discussion of shared neurobiological pathways, comorbidity patterns, or clinical considerations for treatment. But it became clear they didn’t actually know anything about it at all, and “it’s reported that…” was all they could say, revealing their lack of depth beneath the performance of professional authority.

Later, when I shared some of the physical symptoms I had experienced, one of the psychiatrists exclaimed, “You sound exactly like the medical textbook!”—as if it was surprising that a patient might understand and accurately articulate their own condition.

When the episode was published, I received feedback that I had “laughed too much” and my tone was “too light”—apparently not what the hosts and listeners expected from someone they imagined as a typical, desperate “mental health patient” seeking help from “expert” psychiatrists. It was a stark reminder that in Korea, even in spaces claiming to discuss “mental health,” the voices of those with lived experience are only accepted if they remain passive and reverent, never confident or knowledgeable enough to disrupt the expert-centred narrative.

The Lancet letter and my unpublished response

During the doctors’ strike, a group of Korean medical students published a correspondence piece in The Lancet titled “6 months on: South Korean medical students still on leave.” They framed their year-long class boycott as a principled stand against government policy while expressing concern about medical education quality and the challenges of a proposed quota increase.

What they did not mention was their fear of income loss in a system where high earnings and social prestige are often considered a doctor’s birthright. In Korean society, doctors’ interests are often disguised as “public interest,” with dissent rarely tolerated.

I wrote a detailed response to The Lancet, explaining how these protests were not only disrupting healthcare delivery but were also deeply entangled with the silencing of patient perspectives.

I argued that real healthcare reform requires prioritising patient needs and equity over professional privilege, particularly in under-resourced areas like eating disorder treatment. Yet, my response was rejected.

This is the context global readers need to understand: Korea has no structured, evidence-based national system for treating eating disorders, no specialised ED psychiatric clinics, and few professionals adequately trained in the field. Families, acting with the best intentions under this structural neglect, often see hospitalisation as the only option, even as it re-traumatises young people like H.

The story of H.

The story I had shared with him was about H. H is a young woman with anorexia and severe orthorexia. Her mother contacted me during the pandemic. I initially thought she was 15. I later learned she was 19 and had been repeatedly hospitalised, against her will, in psychiatric wards since 2020.

When I met her for the first and only time at the Marche farmers’ market on a surreal, hailing Saturday, she was wrapped in blankets against the cold, walking with her mother, both with the same small frames, stumbling under the weight of fresh produce in an eco-bag. She looked no older than a sixth grader.

But she was 19.

H lives in Ulsan, a city known for high household incomes, but lacking any specialized facilities for ED treatment or even proper child and adolescent psychiatric inpatient care. At 14, she was forcibly admitted to hospital after her father, likely acting from fear and societal pressure, tricked her into taking a tranquilliser.

Despite branding itself as an eating disorder specialist hospital, the closed ward was grim: she was placed in an adult ward, forced to sit motionless for two hours after meals “to prevent calorie expenditure,” and made to eat food dropped on the floor.

She was labelled a “bad child,” and was left to witness traumatic incidents without support.

Later, she was admitted to the psychiatric ward at a children’s hospital, which shut down directly due to the doctors’ strike, leaving the entire region with no inpatient psychiatric facilities for young people.

At the children’s  hospital, H was forced into isolation for refusing to eat fatty meat, compelled to eat cold leftovers the next morning, and often had to wait for more than an hour with a meal tray in front of her for a doctor’s supervision before being allowed to eat—all under threat of physical restraints with parental consent.

How could such treatment happen? ˜ Not 20 years ago, but within the past three to four years, in a country that claims to have a “world-class” healthcare system.

We had hoped to share H’s story through KBS’s 60 Minutes program, but she eventually chose not to proceed with the interview.

Moving forward: A layperson’s plan

Professor Kim’s final agreement—that the initiative for change must come from those with lived experience—affirmed my commitment to continue.

As a layperson with no academic credentials or ties to privileged expert circles, I often feel that this “irrelevance” is a form of liberation. It allows me to explore what truly matters without fear of peer pressure or reputational damage. This rough ground gives me clarity, allowing me to see what is meaningful in our lived experiences and put it into words in my own way.

Now, with the support of several nonprofit foundations, I am preparing to take tangible steps. Whenever I find a nonprofit funding opportunity, I apply, knowing that while each grant is modest, it creates a precious window to move beyond ideas.

This year, I plan to build a resourceful online portal on eating disorders for sufferers and carers in Korea, providing the most accurate, practical, and up-to-date information—something we desperately need.

I am also preparing, alongside my friend Sori Kim—a lawyer known for her animal rights advocacy and as the owner of Bright Bookstore in Seoul—to propose a revision to the Seoul City ordinance to include explicit responsibility for the care and support of children and adolescents living with eating disorders.

Some funding results are pending, and resources are limited. I will continue working as an employee to support myself. But these opportunities are significant: they allow me to embark on actions I could previously only imagine.

We may not yet have a “proper system” in Korea, but we will build what we can, together.

Let’s see what we can achieve in a year, with all our intrepidness.