[Guest blog by Dr. Nicole J. Robinson, EdD, MBA]
Cancer didn’t just interrupt my life. It dropped me into the middle of a broken system where insurance denials, delayed disability decisions, and an exhausted savings account can leave a patient paralyzed by fear. In that space, everything you worked your entire life to build can begin to unravel, not because of poor choices, but because illness exposes how fragile security really is.
I truly believed I had done everything right. I earned my degrees. I built a career I fought hard for and was proud of. I bought homes, supported my family, and founded the Hatz 4 Hearts Foundation to support other patients, much of it while I was already fighting cancer. I created stability through discipline, long hours, and determination, even as treatment quietly shaped my days. I believed that if I kept pushing forward and kept giving back, I would be okay.
Over time, I learned how to live with cancer. I learned how to cope in ways no one ever prepares you for. I learned how to push fear aside and quiet the mental battle so I could survive the physical one. Like so many patients, I learned how to put myself last just to make sure everything else in my life didn’t fall apart.
But illness has a way of catching up with you, no matter how strong you try to be.
Today, I am a breast cancer thriver living with Stage IV metastatic disease. I still show up for treatment. I still believe in more time. But I am also being forced to face what happens when illness collides with systems that were never built to protect people who have done what they were told to do.
I call this space the Forgotten Middle because it is the only way I know how to describe what I am living. After everything I have faced along this journey, that phrase finally gave language to the feeling I couldn’t shake. I felt forgotten by systems, by policies, and by structures that are supposed to step in when life becomes impossible to manage alone. Once I named it, I realized how many others were standing in the same place.
The Forgotten Middle is not just a feeling. It is a class of people. It includes cancer survivors and individuals living with serious or chronic illness whose income, before diagnosis, placed them just above public assistance limits. Then illness happens, income stops, and suddenly there is nowhere to turn. We earn too much to qualify for help, until we earn nothing at all. We fall into a gap not because we failed, but because the system was never designed for people living long-term with Illness.
After years of treatment, I reached a point where my body could no longer carry everything on its own. I applied for insurance protections I had paid into for years, believing that was what they were there for. Instead, I encountered denials, delays, and repeated requests to reopen every chapter of my medical history. Claims were picked apart over language instead of reality. Benefits meant to stabilize my life were withheld at the exact moment I needed them most.
When income stops, life doesn’t pause. Mortgages are still due. Insurance premiums still rise. Medical appointments don’t stop. Family responsibilities don’t disappear. And when disability approvals are delayed or denied, patients are left trying to survive cancer while also fighting financial collapse.
What makes this especially painful is that many of us in the Forgotten Middle are still supporting others. I am still supporting my family. I am still advocating for patients. I am still showing up. Yet illness is treated as if it should be temporary, simple, and neatly resolved. For those of us living with metastatic disease, survivorship is not a finish line. It is ongoing. It is uncertain. And it deserves support.
The emotional weight of this limbo is heavy. Financial stress follows you into treatment rooms and quiet moments at home. It affects how you rest, how you heal, and how you think about tomorrow. It forces patients to make decisions that have nothing to do with medicine and everything to do with survival.
Survivorship, for me, is not about pretending everything is fine. It is about refusing to disappear. It is about naming what is broken so it can be fixed. It is about advocating not only for cures, but for protections that reflect how people actually live while fighting cancer.
I share my story because visibility matters. The Forgotten Middle deserves to be seen, named, and protected. My hope is that by telling the truth about this space, fewer patients will have to navigate it alone.
Dr. Nicole Robinson is a St. Louis native, community change agent, and vice president of public policy for McCormack Baron Salazar, a leading affordable housing developer. After her 2014 breast cancer diagnosis, she founded the Hatz 4 Hearts Foundation to bring hope and support to patients and survivors. Re-diagnosed with stage IV metastatic breast cancer in 2018 and now facing a new battle with lung cancer in 2025, Nicole is spearheading the Last Stage, First Voice™ movement and testified in Jefferson City to advance a Cancer Patients’ Bill of Rights. She embodies resilience, declaring “silently yelling beneath the fear: I WANT TO LIVE!” Find Dr. Robinson at Hatz4Hearts.org.
Nicole is part of the Official NCSD Speakers Bureau Roster.
