My Experience as Siblings of a Child with Rare Disease No5

The Long Road Before We Had a Diagnosis

My younger brother was three years younger than I, and around the age of three he began showing symptoms similar to a collagen disease. This is a personal record of my life as siblings of a child with rare disease. He underwent many tests...Eventually, at Keio University Hospital in Tokyo, he was diagnosed with polyarteritis nodosa. From then on, he continued his fight against the illness and pain, managed with a strong analgesic called pentazocine, which our father carefully controlled.

No one can see what is inside our hearts. The unspoken burden and complex feelings of siblings of a child with rare disease often stay hidden until adulthood.

My Role in the Family as a Child

Because my brother was ill, I naturally learned from a young age that I should not complain or ask for too much. My older brother was three years older, and my older sister five years older. Whenever there was something to discuss in the family, it would be between them and my mother — I was not included in that circle.

It became difficult to express my own feelings. I struggled especially with the summer homework assignment of keeping a diary — writing felt burdensome. I disliked Japanese language class, though I enjoyed calligraphy and attended lessons. Even so, I always ended up with a silver prize, never gold. The same happened in drawing. Those experiences left me with the persistent feeling:“I am always second.”

Living Together — Distance and Responsibility

When my brother became a junior high school student, his eyesight deteriorated significantly. He chose to pursue a path toward becoming an acupuncturist and enrolled in a school for the visually impaired.At that time, I was working as a nurse at a hospital in Hamamatsu City, and we began living together.

Because I worked night shifts and my schedule was irregular, life together was not always easy. As a healthcare professional, I worried about his frequent use of pentazocine and the risk of dependency. As a result, I sometimes found myself taking a strict attitude toward him.

My brother attempted suicide twice by overdosing on sleeping pills. My mother pleaded with me:“He says he has nothing to eat. Can you cook for him?”So, even when I was exhausted after a night shift, I tried to prepare meals for him — though a part of me wished he could simply eat what was already in the refrigerator. Guilt and frustration always existed side by side within me.

Witnessing His Final Days

One day, my brother was suddenly rushed to the hospital with severe abdominal pain. Surgery revealed that his intestinal blood flow had been critically compromised. Intestines that were supposed to be a healthy pink had turned white. The doctor showed me the portion that had been removed — it looked like a worn-out, torn rag, and the image remains vivid in my memory.

Despite surgery, his condition did not improve. He passed away at the age of 24 — far too young.

Not “Supporting” — Just Surviving in My Place

People sometimes tell me, “You supported him so much.”But I have never felt that way.My brother was sick.Our family revolved around him.I simply adapted to that structure to survive.

I was a siblings of a sick child, carrying emotions I could never fully process.Now, as an adult, I write these words little by little — words I could not express back then.

How His Life Shapes My Work Today

This experience is the foundation of my career as a nurse, and now my work providing counseling, family support, and communication training for healthcare workers.

Back then, I had so many feelings that I could tell no one.That is why I continue this work — so that someone who is silently struggling today does not have to feel alone.

If you have had similar experiences, I would be grateful to hear your thoughts.

The lessons from my family life now live on in the services I provide —patient support, family caregiver support, and communication skills trainingfor those working in healthcare and caregiving settings.

If you are struggling with communication in family caregiving or the medical environment,please don’t hesitate to reach out.

Feedback from a Reader (Anonymous)

“No one can see what is inside our hearts.We grow up holding on to emotions no one notices.Unless we face and heal our inner child,we cannot move forward at moments that matter.Your current activities will surely bring comfortto those who are suffering right now.”