Because it contains some personal and painful parts, I hadn't shared my story to such an extent before, but I finally embrace it now.😊
Photo Credits: Airplane and moon, Photo by Pramod Tiwari on Unsplash
1. A Naive Japanese Encounters the US Healthcare System
I was fortunate to enjoy good health while growing up in Japan. I rarely visited a doctor, as Japanese healthcare was unique (no Primary Care was required, and we would simply walk into a specialist's office without an appointment whenever we felt the need, and it wasn’t expensive at all). I was always interested in communication, especially between different cultures, and I got an opportunity to study it in the United States in my 20s. As a student in a small college town, I still didn’t encounter any health issues and rarely saw a doctor… After completing a master's degree, I began working in the DC region. That’s when things changed.
As I entered the US commercial healthcare system, it was literally a foreign world to me. My first primary care physician ordered a series of screening tests. When an abnormal result surfaced, I couldn't grasp its meaning. It was a bewildering experience, compounded by my discomfort in discussing my health concerns in English. With no medically knowledgeable family or friends to turn to, I followed my doctor's advice blindly.
Things became more challenging when I underwent the recommended procedure. To my dismay, I experienced spontaneous bleeding afterward. My concerns felt brushed off when I voiced them. I wasn’t told how to prevent or manage the problem (at least, I don’t recall it). Unfortunately, the procedure had to be repeated, and I consented, not knowing I could ask for other options.
2. A Special Bond with My Grandmother
During this period, I heard that my grandmother in Japan wasn’t doing well. She had been my hero and inspiration. Despite growing up in the pre-World War II era, she embraced learning new things and had a deep knowledge of medicinal herbs, which she grew on her mountain. Her wisdom and compassion allowed her to heal many with her herbal remedies. She also understood my ambition to study and live overseas and generously supported my educational pursuits in Canada and the United States.
As much as I yearned to see my grandmother, my new job made a long overseas trip challenging. I lacked sufficient PTO to leave on good terms, and I also believed she would prefer to see me ‘healthier’… Just a week after my third procedure, I received devastating news: my grandmother had passed away. Shocked and in disbelief, I knew I had to get to Japan as soon as possible. The condition of my health was irrelevant at that time.
3. A Surreal Journey
Post-funeral, I began hemorrhaging and sought help at a local emergency room. Unfortunately, the attending doctor, unfamiliar with the particular procedure I received, offered more criticism than assistance. Feeling vulnerable and furious, I made the decision to leave the ER and hastily booked a return flight to the U.S. Again, I had no one to guide me through these critical healthcare decisions, unfortunately.
During the flight back to the U.S., the bleeding intensified, causing great concern among the flight attendants. They urged me to seek immediate medical attention during my layover in Chicago. However, the thought of facing unfamiliar doctors in a foreign city alone filled me with terror. After fervent pleading and signing a waiver, I was allowed to continue to my final destination.
At one point, I honestly thought I might die. Everything felt surreal. I had just spent a night sleeping next to my grandmother’s body (not an uncommon practice in Japan at that time), and now it seemed we might be reunited, at least...
But luck was on my side, as a good American friend had arranged for my doctor to see me directly from the airport and successfully stopped the bleeding. After some IV infusion, my physical condition began to improve. However, mentally, I spiraled into depression, grappling with the guilt of letting my grandmother down. I also had to confront my passivity toward my health and the sense of helplessness I felt with healthcare.
I had to confront my passivity toward my health and the sense of helplessness I felt with healthcare.
4. A Turning Point: A Vow to Empower Myself and Others
Out of this challenging period emerged a conviction that would change the course of my life. I resolved never to let such a situation happen to me again. But I wasn’t aware of any professional patient advocate back then. Because I needed something I didn't have, I decided to take an extreme but empowering step. I switched my career from software testing to nursing.
I resolved never to let such a situation happen to me again.
My experience as a hospital nurse was marked by profound moments of joy as I cared for my patients. I saw in them reflections of my past self—uninformed and unaware. In addition to my regular nursing duties, I became proactive in educating and advocating for their needs. The heartfelt appreciation I received from my patients was overwhelming. However, the demanding hospital environment eventually led to burnout.
I explored various other nursing roles to advocate for patients and clinicians. I studied Informatics with the hope of developing patient and clinician-centered tools (unfortunately,
that wasn’t aligned with the goal of the institutions and vendors) and worked in home health. Gradually, I became aware that the structure of our healthcare system was often at odds with patients’ best interests.
Gradually, I became aware that the structure of our healthcare system was often at odds with patients’ best interests.
5. A Mission to Protect and Empower Patients
Through my various nursing experiences, I must conclude that nursing wasn't enough for me within the confines of the U.S. healthcare system. Patients often assume that the healthcare system always acts in their best interests. However, the limited time doctors and nurses can spend with their patients leaves many vulnerable individuals to fend for themselves in their most critical moments. I felt compelled to be by their side and provide the protection and guidance they needed.
In addition, our healthcare system has the tendency to push the patient into having more tests and procedures, without considering the patient’s unique circumstances and overall values. In my case, I could have safely postponed the third procedure to be with my grandmother in her final moments. However, my ill-informed decisions caused negative effects on my overall health, and even impacted my ability to conceive, which I later found out. I firmly believed that, with the guidance of a capable advocate, I could have made better-informed decisions and life plans.
My journey, which began as a quest for self-empowerment, has evolved into a mission. I am determined to shield people from the suffering caused by harrowing healthcare events and to empower them in their healthcare, their health, and their lives. As the healthcare landscape has become extremely fragmented, the risks to patients have multiplied—physically, emotionally, and financially. Today, the role of independent patient advocates is more crucial than ever. I'm proud and grateful to be making a genuine difference in the lives of my clients.
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