Understanding the patient’s perspective in a fast-paced world
How to truly see people with chronic illness and what they go through
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I was sick for more than a week recently. The slow recovery gave me a glimpse into a chronic disease patient’s point of view — a perspective that most healthy people often forget, or sometimes casually ignore.
My mom was diagnosed with hereditary cardiac amyloidosis in the summer of 2025. It’s a chronic, progressive disease. Before the diagnosis, she had lived with heart failure for more than three years, unaware of the true underlying condition.
Other than the few months leading up to her diagnosis, she has been living like many chronic disease patients. From the outside, people don’t see immediate, life-threatening symptoms, but over time, we notice her weight loss and how walking has become increasingly difficult for her.
When she complains about her condition, I can’t say that I always listen. Sometimes I hear her as if she were a frustrated driver complaining about traffic into the city — there is nothing I can do to fix it.
Disappointment and impatience during prolonged illness
Most of us understand what being sick feels like when symptoms are acute. In my relatively minor case, Kleenex and sneezes followed me everywhere during the first 48 hours. The “chronic” phase, in my mind, began after two days when I didn’t see the improvement I expected.
That Monday, I had planned to work as usual but ended up taking the afternoon off. I struggled to focus or speak that morning. Most colleagues tried to give me space after knowing I was sick; some continued sending questions and requests until I stopped responding.
That was my first realization that reality wasn’t aligning with expectations. I felt disappointed in my own body, yet I had to yield to its demand.
The next morning, I started joining meetings remotely with my thick, nasal voice. It was obvious that I hadn’t recovered. The routine greeting — “How are you doing?“ — echoed in my head as, “How are you still so sick?”
Around that time, a voice in me began to wonder: “What if I never got better?” It was a dramatic thought but not entirely irrational. As recovery dragged on, impatience built, and each sick day felt like a standstill.
The struggle to be normal
All week, I struggled to return to normal. Some lingering symptoms weren’t obvious to others. My brain was slower to process information and I had to expend extra energy just to keep up in meetings. I could have said something and asked for accommodation, but I didn’t. The world doesn’t really slow down for sick people.
The first day I felt well enough to leave the apartment, the outside world seemed distant. The sounds of people talking, seagulls flapping their wings, and cars passing by felt as if they were from another universe. This world didn’t feel like mine. That state — looking normal but not feeling healthy — changed how I saw the world.
Strangely, feeling “well enough” made it harder to connect. I wondered if my mom feels like she’s living in a different world from ours every day. When we see her as a chronic disease patient, do we really see her?
Ordinary happiness
One day that week, I was exhausted after work from the mental strain. While browsing for something relaxing to watch, I came across a Japanese series called “Hirayasumi.” The story follows a young man who works part-time jobs and, by society’s standards, doesn’t seem to have much going for him. Yet, he enjoys life more than those around him. His happiness comes from simple moments like taking in the view from a pedestrian overpass, or cooking a meal that satisfies a craving.
I looked up the author, Keigo Shinzō, and learned that he had created the original manga when he was being treated for cancer in 2020. During that time, he came to realize the value of an ordinary life.
Knowing that gave the story an almost magical resonance. I found deep comfort in its calm during my sick days. Life slowed to the pace it perhaps should have always had.
I realized there is something we can do for our loved ones with chronic illness: We can slow down to their pace and truly see them. Their physical discomfort is real, and so is the mental stress of being left behind by a world that keeps on moving.
When we truly see them, we begin to see something else as well: the quiet and enduring happiness in an ordinary life.
Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
Harold Rucker
I enjoyed your article. It very nicely explained how the world might not be sensitive about a friend or relative suffering from an illness such as amyloidosis. Thanks so much for sharing your story with us.
Jade River
Thank you, Harold, for your kind words. It means a lot to know that the message resonated with you. I appreciate you taking the time to read and respond!