More Than a Diagnosis: The Uniqueness of the Disease Experience

By Dr. Alex Armitage, DNP, CNL, APRN, FNP-BC Specialist in Supportive Palliative Care, and passionate advocate for holistic well-being.

"DRAW A CLOCK,

PUT ALL THE NUMBERS ON IT

MAKE THE HANDS SAY TEN AFTER ELEVEN"

One of the greatest misconceptions about illness—especially advanced disease—is that it reduces people to their diagnosis. That if someone has dementia, cancer, Parkinson’s, or heart failure, they become the disease. As if the essence of who they are is erased and replaced by a medical label.

But nothing could be further from the truth. Even in illness, even in the most advanced stages of disease, every person remains utterly unique. They express their experience in ways that only they can, reflecting a lifetime of memories, personality, and individuality.

The Clock Test: A Window into the Mind

In my work with dementia patients, I often ask them to draw a clock. It’s a simple test—just a circle, numbers placed around it, and the hands pointing to ten minutes past eleven. But the results are anything but simple. A clock drawing reveals a deeply personal reflection of how that patient processes the world.

Some clocks are missing numbers. Others are scattered haphazardly around the page. Some cluster all the numbers to one side, while others show hands pointing to impossible times. And then there are the clocks that remain eerily perfect, despite the patient struggling to recall what year it is. Each one is a map of the mind, a glimpse into the workings of an individual brain. I’ve seen clocks drawn with intricate details, revealing a person who, despite cognitive decline, still retains their artistic instincts. I’ve seen clocks that are simple and clean, showing a mind that is methodical even as it fades.

Each clock is a signature, a last piece of a person’s inner world.

Beyond the Disease: Expressions of Self

I’ve watched patients with advanced dementia, long unable to recall their spouse’s name, tap their fingers in perfect rhythm to a song from their youth. I’ve seen a woman who could no longer speak reach for a brush and paint, her hands still carrying the muscle memory of years spent creating art. I’ve witnessed a man who could no longer tie his shoes still fold a napkin with precision, the remnants of his years as a tailor woven into his movements.

Even in advanced disease, even when memory, speech, and physical abilities have slipped away, people continue to reflect who they are. They reveal it in a turn of the hand, a scribbled drawing, a fleeting expression. They are never just a diagnosis.

Honoring the Individual Journey

As caregivers, family members, and clinicians, it’s easy to fall into the trap of seeing disease as a single, predictable progression. But when we take a step back, when we really look at the people in front of us—not just their symptoms but the way they move, respond, and interact—we see the remarkable truth. No two patients with the same disease experience it the same way. No two dementia patients are alike. No two cancer journeys are identical.

Each of us carries a lifetime of experiences, habits, and loves. We don’t lose that, even in illness. Our bodies may weaken, our minds may falter, but who we are—our essence—continues to shine through in unexpected and beautiful ways.

A Call to See the Individual

The greatest gift we can give those with serious illness is to recognize their individuality. To see past the diagnosis and appreciate the unique ways they navigate their journey. To watch, to listen, and to cherish the moments when their true selves still peek through.

Because even in disease, even in the quietest moments, each of us remains uniquely, beautifully, undeniably ourselves.