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“Mental Health Policy in the Eyes of Those It Affects” Interview Series Interview #4: Mr. Keigo Kobayashi “Gather and share examples of role models and establish a safety net so people with mental disorders can live every day with peace of mind”

“Mental Health Policy in the Eyes of Those It Affects” Interview Series  Interview #4: Mr. Keigo Kobayashi “Gather and share examples of role models and establish a safety net so people with mental disorders can live every day with peace of mind”

Interview content

Self-introduction and current activities

The effects of the COVID-19 pandemic on people affected by mental disorders and their activities

Mr. Kobayashi’s opinions on Mental Health 2020 and his response to Perspectives 1-5 and Recommendations

Mr. Kobayashi’s perspective on future mental health policy

Mr. Keigo Kobayashi
“Gather and share examples of role models and establish a safety net so people with mental disorders can live every day with peace of mind”

  • Self-introduction and current activities

As someone who has been diagnosed with bipolar disorder and panic disorder, I am one of the parties directly affected by mental disorders. I first experienced depression when I was 18, in my senior year of high school, and have had repeated relapses since then. I am currently working at a company. At age 31, while I was on medical leave due to depression, I had a manic episode which made me experience hallucinations and delusions, and I began behaving strangely. When I came out of it, I woke up in an isolation room in a psychiatric hospital. At the time, I thought I would never be able to return to my normal life. However, thanks to the encouragement and support of the medical professionals I met there, I was able to make a fresh start.

Five years ago, I developed panic disorder and was hospitalized once again. Now, I am back to work. How can a person with mental disorders continue living in society while working a normal day job? To do that, I am always searching for ways to balance my daily life and my illness.

When someone has a mental disorder, there are times in their daily life when they feel it is hard to go on living, and they wonder what they should do. At times like that, I try various procedures and methods to help me adjust my daily life using trial and error, which I then gather. I am not a member of any organization or group, because I would like to conduct my research from a neutral position as one of the parties most affected by mental disorder.

By directly facing and taking control of my emotions, I want to provide proof using my own life that people can retake their lives and go on living, even if they develop a mental disorder. I believe my mission in doing that is to make people feel the peace of mind to say, “I want to live in the next moment,” and overcome the times that they feel life is hard to live.

 

  • The effects of the COVID-19 pandemic on people affected by mental disorders and their activities

With everyone facing difficult circumstances due to the ongoing COVID-19 pandemic, it becomes harder to talk about your own illness. This is because asking for people to be considerate towards you can make you feel uncomfortable when everyone in society is facing difficulties. As for my own work, I felt that my condition was growing unstable and that I would be better off resting, but I had to prioritize actions necessary for the company’s survival.

Also, since we started teleworking more, I have had fewer opportunities for live interaction with my coworkers, like engaging in small talk at the office or going out to lunch. I experienced a lot of psychological damage from having fewer opportunities for face-to-face conversations. I realized firsthand how important it is to have direct communication with other people.

For people with mental disorders, change can have a significant impact on one’s condition, so we do our best to establish everyday lives that have as few changes as possible. That means when society undergoes drastic changes like it has during COVID-19, it takes us a long time to cope, and it can be very difficult to keep our symptoms under control.

 

  • Opinions on Mental Health 2020

When reading Mental Health 2020, I was surprised to learn that there are various initiatives for mental health underway in the Government, and I felt a wave of gratitude. I found it reassuring to learn about those initiatives, and I hope that information will be shared with as many people affected by mental disorders as possible.

I was particularly impressed with the way Mental Health 2020 emphasized the perspective that “mental health affects everyone.” I think this is exactly the case. In the past year, many of the people around me have developed mental health issues for the first time. Mental health disorders can affect anyone, so we cannot keep up with their needs if people are only provided care after diagnosis. Everyone should be aware that they are one of the parties most affected, and all of society should come together to make efforts for mental health on a daily basis. I believe that is what is needed in the field of mental health.

 

  • Mr. Kobayashi’s opinions on Mental Health 2020 and his response to Perspectives 1-5 and Recommendations

Perspective 1: Expand policies that raise mental health literacy in society and promote the activities of those most affected

1.Education must be provided education early in life
In the current situation, we only become aware of issues that can affect the mind when we develop a mental disorder. If, early in life, we could obtain basic knowledge of how the mind works, the different types of emotions, how to perceive facts, and how to resolve conflicts, it would open up more paths in life for us.

It took me about twenty years to get to where I can finally lead a positive life, which happened only recently. Imagine you developed a mental disorder in your forties and it took until your sixties to improve. To prevent things like that from happening, it is important to standardize, as much as possible, methods for facing and dealing with mental issues, and to pass that information on to children. As discussed in Mental Health 2020, I think Japan needs awareness-building programs like Australia’s “Be You” campaign.

2.Depend on people with mental disorders to serve as peer supporters
The main strength of peer supporters is that they can empathize with people with mental disorders. This is because peer supporters can speak from firsthand experience with the same feelings and experiences. Personally, I do not belong to a peer support organization, but I receive quite a few requests to speak with people, such as coworkers, who are experiencing anxiety or issues with their mental health.

I think peer supporters should have a clear understanding of the scope of what they can do, work to provide opportunities for others to find ways to deal with their disorders, and help people obtain peace of mind. Utilizing peer supporters and having them share their experiences also has the potential to lead to earlier medical intervention, as they can serve to connect people with various systems, or help relieve apprehension towards visiting hospitals for examinations or towards taking medication. To achieve that, however, we must establish a system that allows peer supporters to work closely together with hospitals and relevant professionals.

Perspective 2: Establish systems for providing care that are integrated into communities, compatible with everyday life, and meet the needs of people with mental disorders.

3.Provide a broad variety of treatments through multidisciplinary cooperation
Before I was hospitalized for my manic episode, I only ever had contact with physicians and counselors at a small clinic. It was not until I was admitted to a large psychiatric hospital that I first got to meet professionals like occupational therapists and social workers, or learn about things like cognitive behavioral therapy (CBT), independence support systems, and systems to support people with disabilities.

When I get to interact with a physician or a social worker, and we have a fifteen-minute appointment, our time together is limited to fifteen minutes. However, when talking to people in various other positions, such as occupational therapists or social workers, they take time and we can interact naturally. I think that is why I was able to speak openly and naturally and share my feelings, and that is why I could rely on them.

When I was hospitalized for medical protection, I thought I would never survive. But then, the occupational therapist told me, “Don’t worry. You will definitely get better.” Those words save me. I feel that professionals like occupational therapists and social workers have the ability to overcome barriers. In retrospect, I wish I could have been involved with them earlier, when my symptoms were less severe. Doing so would have allowed me to receive treatment and face my illness while receiving comprehensive support.

4.On the topic of involuntary hospitalizations like the “admission by legal control” system
Although I now understand that being hospitalized in an isolation room was the right decision for me at the time, speaking from the viewpoint of a person with a mental disorder, it was an extremely frightening experience. I woke up in a locked room with nothing but a toilet, where nobody could hear me even if I shouted.

During that time, one of the nurses who brought me a meal said, “Make sure to drink cold water,” and put ice in my water. I was touched by that, and I thought that it was possible to feel kindness even in a place like a hospital, and I remember feeling peace of mind for the first time then.

Even though I just got to exchange a few words with a nurse when I was hospitalized, that experience made me realize it is important to interact with many different types of nurses. It is important to secure opportunities to interact with various people. That is because during times like that, if you can encounter someone who understands your situation, it can bring you relief and peace of mind.

5.Concerning long-term hospitalizations
You might be surprised to learn that even when you are hospitalized, the hospital does not actually do anything for you. “Hospitalization” actually has strong implications that you are just waiting for medication to kick in. When I was hospitalized, I did not understand what goal I should pursue while I was there, or how I should use my time there. Also, after I was discharged, other than the fact that my symptoms had calmed down, nothing really changed from before I was hospitalized. I did not know how I should live my life after discharge, or how to live together with my disorder. I felt completely unarmed to face life in the world outside.

Therefore, instead of using the time in the hospital to just wait for recovery, I think it would be better if there were types of interventions to encourage social recovery, such as counseling. That would mean going beyond restoring someone to their normal state from negative state during hospitalization. Instead, they should be able to learn something, like in school, and come out of the hospital with more than they had when they went in.

6.The burden placed on families
Based on my own experience, I strongly feel that the presence of a person with a mental disorder can place a significant burden on the family members providing them with care. That is why I do my best not to rely too much on any one person or place in my daily life. Instead, I try to share my time with many people at many places, while doing many things. The people I spend time with include my parents, my siblings, my friends, my friends’ families, people at work, and people in the neighborhood. Places I visit include the company I work at or the hospital, where I make outpatient visits with an occupational therapist or receive CBT. I also think it is very important to be able to spend time alone. I take time out for myself to find things that add to my life, like movies or TV shows that make me think, “This is fun,” or, “That’s beautiful.” I feel that it is important to draw upon various people, places, and things and use them to supplement each other, so that all of the time in my life is connected.

Perspective 3: Build an infrastructure for community living that provides places to live, places to work, and places to belong.

7.Concerning hospitalizations to prevent or save patients and their families from struggling financially (social welfare-type hospitalizations)
I think there are many people with mental disorders who are facing concerns related to their ability to obtain the financial resources for maintaining the minimum standard of daily living. In particular, if someone is hospitalized repeatedly, living in the world outside of the hospital gets more and more scary. I think it would be good if there was a balanced system to address that fear, which would help people secure the bare minimum housing and maintain economic stability without becoming dependent on the system.

Meanwhile, I think new, more flexible work styles like “super short employment” contracts need to become more common. When I returned to work, it started with two half-days per week, and I gradually increased my working hours over the course of about half a year. Right now, it is still difficult for me to work as many hours as other employees, so I have restricted myself to certain days and times and am doing my best to handle whatever tasks I can in that time.

8.Provide people with mental disorders places to belong and live
Every fear people with mental disorders feel towards daily living is rooted in the question, “Will I be able to get by?” To respond to that, I think people could get the courage to live if there was a place they could stay temporarily when they feel that they cannot make it on their own. If we knew there was a place to live, eat, bathe, and brush our teeth that we could go to when troubled, it would feel like a protective charm that would give us the courage to try to face even the most difficult challenges.

Perspective 4: Create systems for gathering the data and information needed for evidence-based policy-making and policy evaluation.

9.Accumulating evidence
Even now, I do not really understand what depression is. Although I have been living with mental health issues for twenty years, I feel like I am only now getting a general idea of what those issues are. This situation reinforces my belief that it is important to be able to get a complete overview of each disease. People living with mental disorders want to know things like how much their condition has advanced when viewed in terms of the entire disease, or their current progress on recovery. This is another reason why we must accumulate evidence.

Other thoughts

10. The negative effects of assigning names
Just hearing a name like “cognitive-behavioral therapy” makes some people resist, and they immediately put up mental barriers. That is why I think it would help people accept such therapies more easily if they were renamed in ways that communicate the fact that they do not require people to think about things in a way that is overly difficult. I think that organizations and treatment approaches should be given names that are easier for people to accept. There are cases where it is better not to frame them as “such-and-such therapy.” It is more important to communicate the benefits and essence of each approach to more people.

I must mention that as far as I know, when someone wants to receive more specialized cognitive-behavioral therapy, they generally have to pay high costs. When the therapy is not covered by insurance, it costs about 10,000 yen per session for five sessions in total. Counselling is also expensive. It is unfortunate that there are people who cannot access the care they need due to problems related to cost.

 

  • Mr. Kobayashi’s perspective on future mental health policy

As a person with a mental disorder, I have always been worried about how I would be able to continue living. Therefore, I think there are many people with mental disorders who can obtain hope towards living by learning from examples when people successfully took control of their lives. I think it is important to accumulate examples of role models that we can use to show people the way forward.

We should accumulate evidence of how people from all walks of life with mental disorders perceive their illnesses, what systems they use, and how they live, and then share that evidence in a way that gives people hope. I do not mean only people with disabilities. We need to show everyone that when they are faced with a problem, choosing an relatable example from the vast amount of experience accumulated by their predecessors will make it easier for them to take the next step.

However, we must take care to make those stories easy to relate to and not overly rigid, such as by adding some stories that are fun, lighthearted, or indirectly related to the topic at hand. For example, we could use media like anime, stories, and social networks. Doing so will be important to reach as many people as possible. Everyone is familiar with the “Town Page” phone book. I think it would be great if we could create a “Life Page” which would always be close at hand. It would help everyone find role models for various ways of living that they could access anytime, anywhere.

 

Interview date: November 26, Online (Zoom)


“Mental Health Policy in the Eyes of Those It Affects” Interview Series

Since its establishment in 2004, Health and Global Policy Institute (HGPI) has worked as a non-partisan think tank under the guiding principle of helping citizens shape health policies by generating policy options. Through conversations with multi-stakeholders including members of the public and parties most affected in Japan and abroad, HGPI amplifies the voices of citizens in proposals and statements in a global context to contribute to the realization of evidence-based health policies.

The knowledge provided to HGPI from people affected by mental disorders throughout our ongoing efforts for mental health in a project that began in 2019 led to the presentation of “Mental Health 2020 – Proposal for Tomorrow: Five Perspectives on Mental Health Policy” in July 2020. Moving forward, we will help empower people affected by mental disorders to independently engage in forming mental health policy and have their voices be heard by providing access to knowledge from organizations representing those most affected in other disease fields in Japan through collaborations with other HGPI projects and by creating opportunities for opinion exchanges and discussions with organizations representing people affected by mental disorders from abroad.

As part of this vision, we have started publishing a series of interviews featuring people affected by mental disorders. By incorporating their honest opinions in the aforementioned policy proposal and by disseminating their perspectives in both Japanese and English, we will contribute to the creation of mental health policy that further improve conditions and quality of life (QOL) for people affected by mental disorders in Japan.

■ Interview 1: Mr. Ken Udagawa (COmmunity Mental Health & welfare Bonding Organization Chairperson)
“Elucidate the physiology of recovery by improving longitudinal studies”

■ Interview 2: Mr. Yasuhiro Obata (Secretary General, The National Federation of Associations of Families with The Mental Illness in Japan (Minna-net))
“Placing Mental Health at the Center of National Policy for Harmony between the Healthcare System and Communities”

■ Interview 3: Mr. Kenjiro Horiai (YPS Yokohama Peer Staff Association)
“As Someone with a Mental Disorder, I Want to Help People Facing Similar Circumstances”

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