Envisioning the Future Beyond Invisible Challenges

Shiori Nagamori

Born in 1973 in Sapporo. Licensed social worker. As a person living with an intractable disease, I am currently engaged in patient support activities. Representative Director of the National Connective Tissue Disease Association; Director of NPO Support Network Japan for Intractable Diseases (NANBYO-NET JAPAN); Assistant Secretary-General of the National Research Center for Intractable Diseases; and staff member at the Japan Patient Association (JPA).

In my first year of high school, I was diagnosed with SLE (systemic lupus erythematosus), which is a type of intractable diseases. Along with unexplained fevers and fatigue, my skin would blister when exposed to sunlight, often followed by a high fever which in turn would force me to retreat to bed. I could not even go outside without a hat, gloves, parasol, and long sleeves in the scorching summer heat and blazing sunlight. I sometimes came dangerously close to suffering heatstroke.

The arthritis in my fingers made even holding a pencil painful. It was an extremely difficult situation for a student studying for exams.

My physical strength declined so drastically that I felt like a completely different person from my usual healthy self. Even if I start my activities in the morning, by evening I would be unable to move or think clearly. There were days when I did not even have the energy to walk a few hundred meters, so upon returning home, I would first lie down and rest for several hours. It felt as though I were a cold engine: once warmed up, I could move again, but I sensed I could not do too much right away, and my output remained quite limited.

I also failed to meet the attendance requirement at school and had to repeat one year. Then, I transferred to a special needs school. I attended classes while hospitalized, but the introduction of computers in the classroom made studying much easier for me. Spending time with classmates at the special needs school who were also facing difficulties helped me realize that I was not the only one struggling, and gradually I came to accept my illness.

After starting university and living alone, my health fluctuated between periods of improvement and deterioration. There were many times I could not attend lectures or practical training lessons, and I often felt discouraged when I would compare myself to my otherwise healthy classmates. Since my illness could not be easily discerned by a simple glance, it was difficult to receive proper support. I researched social welfare systems, but found that most—such as the Physical Disability Certificate, disability pensions, home help services, grants, and the employment quota systems for individuals with disabilities — did not apply to my situation. The only support I qualified for was partial public coverage of medical expenses as an individual with an intractable disease, which I appreciated, but I still had to pay regular treatment costs, and the support felt insufficient.

Through these experiences, I became determined to create a society where individuals with intractable diseases can live more comfortably. I studied sociology at graduate school, and after graduating, I began working as a counselor for a patient association for intractable diseases. The knowledge I had acquired while researching welfare systems for myself became invaluable in counseling others and in my studies to become a licensed social worker.

To continue working, I make a conscious effort to conserve my energy. At home, I have reduced my belongings and organized my space to minimize the effort required for housework and chores, being careful not to let fatigue build up. I live close to my workplace and drive when necessary. I also make sure there is a space at work where I can lie down. On business trips, I stay at hotels near the venue, attend only the necessary parts of the event, and rest in my room when needed. During overseas trips, I have sometimes had to visit local emergency hospitals and return home without sightseeing. Even remote meetings can be exhausting, so I avoid scheduling anything before or after them to maintain my health. I also try to appear energetic when meeting others.

My work involves various projects related to supporting individuals with intractable diseases. I serve as the secretariat for a research group overseeing training programs for counselors nationwide, and have been involved in forming an NPO dedicated to supporting individuals with intractable diseases. I am also working on a project to preserve and make publicly accessible decades’ worth of journals published by patient associations. This effort comes from my desire to preserve the experiences of patients who lived in the pre-internet era and contribute to future social development. In addition, I have founded a local branch of my own disease’s patient association.

Now, as the representative of a nationwide patient association, I am working to build a social system that makes life easier for individuals with illnesses, collaborating with medical institutions, government agencies, businesses, educational institutions, and local communities.

Our current activities are only possible thanks to the cooperation of fellow patients and supporters across Japan and around the world.

I feel that being able to create a future alongside people I would never have met if I had not become ill is the greatest gift I could receive.