Can people experiencing mental illness teach? Absolutely

Can people experiencing mental illness teach? Absolutely

At noon on April 22, the small car stopped in front of the nursing school building, a structure of standardised windows and no excess. “We’re here,” said Professor Jeong, turning from the driver’s seat. The four passengers unfolded their crouched bodies and got out of the car. The Jeonbuk National University College of Nursing campus, which I was visiting for the first time, was quiet and seemed almost vacant, much like other campuses I’ve seen recently.

As we walked through the front door, I mused aloud about the ongoing doctors’ strike, “How are medical school classes going these days?” Professor Jeong muttered, “Well, not quite right.”

The ‘human library’ method

Prof. Jeong teaches psychiatric nursing at Jeonbuk National University College of Nursing in Jeonju. Today, for her second Participatory Psychiatric Nursing Education class, she invited five people, including myself, to participate as ‘guest instructors’. Prof. Jeong successfully experimented with this teaching approach in 2023, using the ‘human library’ method to provide students with lived experiences of mental illness.

“In the first semester of 2023, four instructors participated, covering topics like bipolar disorder, schizophrenia, alcohol use disorder, and PTSD,” Prof. Jeong explained to me. “We haven’t addressed eating disorders yet, and I thought if you could participate this would be a great learning opportunity for my students and myself.”

Our group, departing from Seoul and Gwangmyeong, respectively, arrived at Jeonju Station mid-morning. Professor Jeong met us and took us to a nearby Italian restaurant for a quick lunch. I sat by the window next to Ko, who had experienced bipolar disorder. Next to him sat petite Kim, who had experienced PTSD. Across from me was Lim, who had experienced schizophrenia, with Professor Jeong seated next to her. We ordered food, and I opted for a garden salad without any drinks. If eating alone, I might have chosen a salmon or ricotta cheese salad with juice, but I felt nervous and had no desire for more.

The other instructors had been involved in this project since its inception and were familiar with each other. Each had their own experience with mental illness and was engaged in advocacy in their own way. Particularly, Ko had established himself as an expert by running a YouTube channel and collaborating with medical professionals to plan an educational program for families of people experiencing mental illness.

Participatory Psychiatric Nursing Education

The Participatory Psychiatric Nursing Education program allows students taking the psychopathology class to hear directly from lived experience instructors. The aim is to give nursing students an experiential opportunity to see future patients not just as diagnostic cases but as individuals leading their own distinct lives. The results from the first class of the Spring 2023 semester were published that same year in the International Journal of Mental Health Nursing.

In the paper, the authors highlight the exclusion of lived experience expertise from psychiatric nursing education in Korea, contrasting this with practices in Europe and Australia. The purpose of the experiment at Jeonbuk National University was to address this gap. Interviews with 14 students and four instructors revealed that the experience enhanced students’ understanding of person-centred mental health nursing. It also provided instructors with opportunities to reinterpret their mental health experiences positively, viewing themselves as dignified members of society.

The dangers of innocent prejudice

During lunch, Prof. Jeong shared her motivation for creating the class. One of the liberal arts subjects she took in college was a gender studies lecture on sex. As a naive student, she was shocked by her ignorance when exposed to adult film as lecture material and a visiting instructor from a sexual minority. This firsthand realisation of the dangers of innocent prejudice inspired her to provide a similar eye-opening experience for her students.

The second session of Participatory Psychiatric Nursing Education in the Spring 2024 semester, which I joined, had a slightly different structure. In 2023, instructors led the class at the outset, delivering lectures and taking questions immediately. However, students often became shy and cautious, unable to ask questions properly. Prof. Jeong’s updated approach for the 2024 session included:
(1) pre-recording our lectures and using these videos for the students’ initial encounter with us and
(2) having all instructors visit the school at the end of the lecture series for group discussions.

This approach allowed students to have free conversation time, engaging in more informal dialogue with the instructors rather than raising hands in a formal setting.

Students haven’t met ‘actual patients’ before

Professor Jeong’s advice, before we began creating lecture materials and recording videos, was to remember that students would already have theoretical knowledge about each diagnosis. Most importantly, these students were not the general public but nursing students. She also sent me a file of her presentation materials for each diagnosis class as a reference. After reviewing these materials, which included an overview of eating disorders and a detailed list of biomarkers relevant to clinical nurses, I gained a clearer understanding of what was expected of me.

A great hint for preparing my lecture came from Lim, who completed her lecture material first and shared it in our group chat, and an unexpected comment from Prof. Jeong. She said, “Please teach the students how thin an anorexic patient can be. They probably don’t know much because they haven’t had a chance to meet actual patients.”

Lim’s presentation focused on her illness experience, structured as a ‘hero’s journey’ narrative. I was initially unsure about how to introduce eating disorders. Still, I realised that, instead of an expanded version of a psychopathology textbook, I was expected to present a firsthand, personal account of my experience as a patient.

My lecture began, ‘BMI is arbitrary’

Prof. Jeong’s comments about extreme cases of eating disorders gave me a hint about what to emphasise. Neither she nor her students had seen eating disorder patients in a clinical setting. Recently, I spoke with Ms Kim, president of the Korean Type 1 Diabetes Association. Despite the recent achievement of having continuous blood glucose monitors covered by National Health Insurance for type 1 diabetes patients, obtaining prescriptions was still difficult, she said, because hospitals that previously treated only severe cases with life-threatening complications are unfamiliar with patients who can self-manage their condition. It was surprising to learn about such challenges beyond psychiatry.

Similarly, the only eating disorder patients that medical staff in general hospitals might have encountered were those with severe anorexia, forcedly admitted due to extreme underweight, nutritional deficiencies, and unstable biomarkers. As the term ‘forcedly’ implies, patients with eating disorders often have ambivalence about treatment. Moreover, very few hospitals in Korea can treat eating disorders, making it unrealistic to assume medical staff have much experience with such patients.

Therefore, I devoted the first page of my presentation to discussing the arbitrariness of the body mass index (BMI) standard and the recent discussions about atypical anorexia. “BMI is arbitrary.” That was the beginning of my lecture material.

Nursing students receptive to voices of experience

The students we met that day were part of the experimental group, fortunate enough to be selected. These students began to gather in the quiet lecture hall, creating a lively commotion. As instructed by the professor, they arranged their desks into five groups and prepared to meet with the five instructors in turns. After waiting for the latecomers, the session began.

About eight students sat in each group, forming a circle with the instructor at the head of the table. I jokingly likened this arrangement to the Last Supper. For 30 minutes, the instructor spoke to the students and then moved on to the next group. The lecture proceeded in this rotating manner. These fresh-faced, young students seemed completely different from those I had met at book talks or Eating Disorder Awareness Week events. Fortunately, everyone seemed genuinely interested and focused.

Among these students, I didn’t sense anyone telepathically saying, “I’m suffering too. Please recognise me.” Of course, these weren’t psychiatric nursing students but simply nursing students learning psychopathology—fortunately unconnected to any romanticised search for identity in those diagnoses. For most of them, the psychopathologies we instructors faced were likely nothing more than an ‘unfamiliar misfortune.’

So, from what position should I speak to these students? At what unexpected three-dimensional coordinates should I position myself to challenge their expectations? Establishing these coordinates and vectors is a preparatory stance I instinctively take when asked to express my social position as someone with an eating disorder. As a strategy and marketing planner, I refuse to conform to traditional formats. The same applies to my writing. This is an intuitive action rather than a deliberate intention.

My role as a lived experience instructor

That said, my role as a ‘lived experience instructor’ was conflicted. The term itself is contradictory. The word ‘nevertheless’ is implicitly omitted between ‘lived experience’ and ‘instructor’. The primary purpose of Participatory Psychiatric Nursing Education is to allow students, who typically learn diagnoses from textbooks, to gain experiential knowledge by meeting real people with mental illness, thereby eliminating any prejudices.

However, more critically, the fact that five of us, who are now somewhat recovered, well-functioning, and pro-social, were chosen to meet with the students as instructors means that we are imparting the message that mental illness can be managed through the medical system. This also implies a hopeful narrative that ‘recovery can be achieved through treatment.’

From the moment I began creating the lecture materials and recording the video, I adopted a confident and professional stance aimed at overturning the most prevalent, superficial, and low-level prejudices about people with eating disorders being ‘ignorant’ or ‘irrational’. I provided examples to demonstrate that the typical ‘onset-treatment-recovery’ trajectory might not be effective. I emphasised that in Korea, very few psychiatrists or mental health professionals know how to treat eating disorders properly.

At the same time, I had to be aware that I was an inevitable monster to them. I had to constantly engage in self-conscious reflection to ensure my confidence and cheerfulness did not cross a certain threshold.

Questions reveal a poor understanding

With five groups sitting in one lecture hall and the meetings with instructors happening simultaneously, I had to raise my voice from the beginning. By the time I moved to the second group, my voice was already strained. When I appealed with a smile and a gesture, Prof. Jeong quickly provided bottled water, for which I was grateful.

As soon as I sat at the first group’s table, I greeted the students loudly to ease their shyness. Before they could hesitate, I glanced encouragingly at the girl to my left and suggested we start asking questions clockwise, beginning with her.

Prof. Jeong had collected the students’ questions in advance and shared them with us, so the questions were familiar. Looking back, the number of expected questions was limited, and since each student had to ask something in turn, some probably came up with their questions on the spot. The shy faces of those trying to ask naturally were quite endearing.

Eating disorders still have low public awareness in Korea, so many of the students’ questions reflected a limited understanding of the disorder. For example, one student asked if showing ‘mukbang’ videos (an online broadcast where hosts eat a lot of food while interacting with viewers) to patients with anorexia could help them regain their lost appetite. I took a deep breath and explained that no one with an eating disorder “loses their appetite.” Instead, I described the behaviours and habits that extreme hunger and obsession with food create in patients.

People with eating  disorders do not diet ‘to be pretty’

When asked, “I guess words like ‘You look pretty already!’ aren’t very helpful to the patient, are they?” I nodded emphatically. I explained that those with eating disorders don’t diet to be ‘pretty’ but because they want their bodies to disappear.

The most provocative question was about my lowest weight during my illness and my current height and weight. Although an awkward laugh did escape, this was no longer an embarrassing moment for me. I responded as I have to journalists by talking about the foreign media guidelines on eating disorder reporting, which avoids mentioning specific numbers. I concluded with a joke, saying that my personal body measurements are in my book, which no one reads and doesn’t sell well, so they should buy it to boost its sales score in online bookstores.

A critical moment came about an hour into the lecture when I needed time out due to a long-term physical ailment, so we took a short break. The students left their seats, and we instructors had a chance to sit and relax at the desks pushed to the back of the classroom. I rested, hoping my chest pain would subside. Having already finished my bottled water, I reached into my eco bag and took out a mini sausage I had bought at a convenience store at Yongsan Station that morning. “You eat that too?!” Professor Jeong asked, looking curious. If you don’t want to faint at an unexpected moment and place, you must eat something quickly.

Remembering the nurses who offer comfort

Fortunately, my body settled before the lecture resumed, and I continued the group activities more energetically than before, “with the power of the sausage.”

Among the common questions from students was, “What did the nurse do that was most helpful during your hospitalisation?” I shared a story in my book and mentioned it in my lecture materials and video. I talked about the remarkable talent of the nurses who comforted the hopeless young women in their 20s stranded in Korea’s first eating disorder inpatient ward, established early in this century.

The nurses’ compassionate approach helped the young women rest and fall asleep.

Until that point in my life, when I was crying and unable to sleep, soaking my pillowcase, nobody had sat beside me without getting angry.

Nobody had held my hands or given me a long hug, conveying a sincere message of genuine support. Such kindness from these nurses was an unexpected reaction I had never experienced before. It meant so much.

Two baby tangerines and a glass of milk

I often refer to an anecdote involving Ms Ahn, a former nurse who has run an eating therapy program for more than 20 years. I stayed in the inpatient ward for about two months in total, but due to my illness’s stubbornness, I was discharged midway, only to return twice more. It was like a scene in Henri Nouwen’s The Return of the Prodigal Son.

Ms Ahn, who was on night duty at the time, asked if I had eaten dinner when I returned after a binge and purge episode. I didn’t have the energy to explain, so I just said, “No.” I remember she brought me two washed baby tangerines and a glass of milk that she had warmed in the microwave. I was dumbfounded. This was such an unexpected, kind gesture. Why would she show such devotion to someone like me? I was reminded how Jean Valjean in Les Misérables changed his mind when the bishop was unexpectedly kind. Ms Ahn’s kindness that night revised my perception of the world.

However, I wonder how the nursing students felt when I answered their questions about the role of nurses with this anecdote. Especially when I saw the faces of the male students, who were more numerous than I expected, I worried they might be disappointed that I was emphasising the value of ‘care,’ often dismissed as unimportant, rather than a specific treatment or therapy.

Do nursing students aspire to a career where their role includes providing comforting care and understanding for their patients? Are there people who enter nursing school dreaming of such a role?

In today’s world, caring does not make money. And as we all know, medical ‘experts’ do not perform care with their own hands. Caring is mostly the responsibility of low-wage female workers.

During my hospital stays, it was the nurses who spent all day with the girls exiled from the world, dealing with everything that happened in the ward with their wit and humour. Some borrowed tapes from me, shared stories from their childhood, and sat with us at the eating therapy table, fighting battles and comforting us.

If nurses are responsible for more than 90 per cent of the actual inpatient treatment for eating disorders, why not recognise them as the leading experts in this field?

Why don’t nurses who are passionate about treatment and care and receive expert training be recognised for their qualifications and be given the authority to perform medical practices with guaranteed income? I’m curious about this.

We help ourselves when help is lacking

I can’t write in detail about one instructor who participated in Professor Jeong’s psychiatric nursing education project due to her involvement in Alcoholics Anonymous (AA) self-help groups. AA’s principle of anonymity prevents me from revealing her name or details.

Susannah Fox is a healthcare and information technology expert who served as the U.S. Department of Health and Human Services Chief Technology Officer during the Obama administration. She describes Alcoholics Anonymous (AA) as a valid care system created by afflicted individuals in the absence of adequate medical services in her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. Sara Riggare, a Swedish patient-led healthcare researcher, and Kristina Saffran, who founded the eating disorder charity Project HEAL and has a telehealth startup, Equip, have also been recognised by Susannah.

The chronic deficiencies in the current eating disorder treatment system might present an opportunity for innovation.

If recovery cases through the existing medical system are rare, why cling to it?

A student asked what actions or attitudes from medical staff would help patients with eating disorders recover. I shared the story of Chaeyoung, who had returned home upon discharge as an inpatient. Chaeyoung couldn’t travel to Seoul for prescriptions, so she switched to a local hospital. Her new doctor, who had read her story in a book she authored, confessed that he knew little about eating disorders and asked Chaeyoung to share what had been effective for her. When Chaeyong told this story at this year’s Eating Disorder Awareness Week, I clapped my hands at this piece of luck and shouted, “Congratulations! You have the fortune of meeting a good doctor!”

Epistemic Justice was this year’s theme for Eating Disorder Awareness Week, which I hosted with our Rabbits in Submarines Collective friends.

Can people experiencing mental illness teach? Absolutely

Can people experiencing mental illness teach? Absolutely. We can explore entirely new approaches together.

REFERENCES
Ahn, S., Shin, S., & Joung, J. (2024). A model for the involvement of service users as instructors into the psychiatric nursing curriculum in Korea: A qualitative study on participation experience. International Journal of Mental Health Nursing. Advance online publication. https://doi.org/10.1111/inm.13292
Fox, S. (2024). Rebel health: A field guide to the patient-led revolution in medical care. MIT Press.