What is the "Ideal Distance" Between Collagen Disease Patients and Their Families?

The Collagen Disease PR Association Mirai (Representative Director: Masaya Shimojo, Location: Shibuya-ku, Tokyo) will host its 1st anniversary online event, "The Ideal Distance Between Patients and Families," on Saturday, July 11, 2026.

This event aims to explore the "misunderstandings" and "isolation" caused by chronic illness through dialogs among collagen disease patients, their families, and a psychiatric social worker.

Why the Theme "Distance Between Patients and Families"?

Collagen disease is a chronic illness accompanied by symptoms like pain and fatigue that are difficult to see from the outside.

Consequently, misunderstandings easily occur, such as:

"You look fine."

"Is it just in your head?"

"I don't know how to treat you."

As a result, not only the patients themselves but also the families and partners who support them tend to carry feelings of isolation and psychological burdens.

At Mirai, we have listened to many voices of patients and families through our article submission program "Mirai no Kiroku" and our YouTube channel "masaya's Chat Cafe."

What became clear was the reality: "Patients are suffering, but families are suffering just as much."

This event focuses not on "who is right," but on how patients and families can understand each other precisely because they stand in different positions.

Event Content

The event will screen pre-recorded special dialog videos and answer questions live during the broadcast.

Speakers:

masaya (Collagen disease patient, Representative Director of Mirai)

Nao (Family member perspective, Director of Mirai)

Emi Kikuchi (Psychiatric Social Worker, Certified Public Psychologist)

Dialog Themes

Part 1:

"What impacts occur when collagen disease develops?"

We will discuss life changes due to the disease and anxieties faced by both patients and families.

- The gap between "previous self" lost to the disease. - Continued anxiety even when symptoms are stable. - Loneliness arising from being told "You look fine." - Suffering carried by both patients and families.

"Why do patients and families misunderstand each other?"

We will delve into the emotional gaps that occur precisely because they are family.

- The background of the desire to "want to be understood." - Reasons why well-meaning words and actions become painful. - Moments when words of encouragement lead to misunderstandings. - Whether it is a change due to the disease or a change in family relationships.

Part 2:

"What is the role of the family?"

We will consider the worries faced by the supporting side.

- How far should one go in providing support? - The pressure of feeling "I must do something." - The difference from the support the patient actually wants. - Ways of thinking to avoid keeping problems to the family alone.

"What is the ideal distance?"

We will explore the boundaries for patients and families to maintain long-term relationships.

- Guilt about relying on others. - Anxiety about over-supporting. - Worries about codependency. - The "ideal distance" that differs for each family.

Pre-event Survey & Q&A Session

In conjunction with the event, a pre-event survey targeting patients and families is scheduled.

We will collect opinions on:

Relationship changes due to illness

Anxieties of patients and families

Experiences of misunderstanding

These will be introduced during the event.

The survey is available here.

By conducting dialogs based on real voices, we aim to visualize both perspectives instead of focusing on "only patients" or "only families."

Toward a Society of "Understanding Leads to Kindness"

The number of collagen disease patients is small, and social awareness is not high.

Therefore, it is a disease where isolation from "not being understood" easily occurs.

Mirai continues its activities to connect patients, families, and society, aiming for a world where people can openly say, "Maybe this is collagen disease?"

We hope this event will encourage patients and families to put their true feelings into words and take a step toward a society where people feel "understanding led to kindness."

Event Outline

Event Name: "The Ideal Distance Between Patients and Families: Collagen Disease and Mental Anxiety"

Date & Time: Saturday, July 11, 2026, 13:30–15:00

Format: Online streaming (Streamed via masaya's Chat Cafe)

Participation Fee: Free

Organizer: Collagen Disease PR Association Mirai

[About Collagen Disease PR Association Mirai]

The Collagen Disease PR Association Mirai is a general incorporated association established on July 3, 2025, with the mission "Aiming for a society where people can say: Maybe this is collagen disease?". The association works to raise awareness of collagen diseases, promote early diagnosis, and improve patient QOL. Its diverse activities include disease education, research, information dissemination, managing patient-family communities, and hosting workshops and lectures.

Official Website: Collagen Disease PR Association Mirai