One of the most important parts of this work for me is finding language for experiences that are deeply felt but too often go unnamed and unseen.

Too many of us carry the isolation, sadness, grief, frustration, anger, and rage alone. We hold it in because we are afraid of burdening the people around us—or because we don’t yet have the words to describe this new and unsettling reality.

After my diagnosis, I wasn’t only trying to manage symptoms, side effects, and follow-up care. I was desperately seeking to understand changes in my body, my energy, my identity—and the frightening feeling that I no longer recognized myself. So much of what I was experiencing didn’t fit neatly within the usual language of treatment and survivorship.

Caregiving has shown me the other side of this same experience. Much of what it means to live with illness or care for someone you love happens beyond the doctor’s office—in relationships, homes, work, finances, changing roles, difficult decisions, and the quiet labor of simply getting through each day.

My work is to help make these experiences visible and give people language for what they are carrying. By studying the experiences that often go unseen or unmeasured, we can translate these lived realities into clear patterns and research evidence, we can shape healthcare programs and systems that are truly responsive to the whole person.

Whether I am supporting one person, facilitating a group, developing a program, or contributing to research, I return to the same questions:

What is happening in patient and family lives that healthcare has not yet made room for?

And how can we design systems of care that are equitable and responsive to those full realities?