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My (Un)prepared Patient Story


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Many of us don't fully understand what it takes to participate well in our care. Even with all my experience, I'm constantly surprised at what I now have to know and do in order to get good care and make the most of it.

Be a Prepared Patient blog and resources provide solid, practical advice about what you can do to participate fully in your health care. We hope you find the information and resources here useful. Please let us know how we're doing.

Here's how I became a prepared patient:

[video transcript] On my twentieth birthday I was diagnosed with cancer and I spent weeks in intensive care while my doctors tried to halt the cancer's galloping course through my body. I was devastated. I was just a child. I thought, "I can't die now, I'm just starting!"

After I was well enough to go home, I began the daily trek back and forth to the hospital for months of radiation treatments followed by two years of chemotherapy. I was skinny. I was hairless, and I was noncompliant – that is, I didn't follow my doctor's orders.

Each time he gave me chemotherapy, my doctor would explain this whole complicated drug regimen: you take six pills now, three pills then and after lunch and so on. I didn't do it. One day I might take all the pills; some days I would skip a few, and other days I'd take none. My doctor wanted me to stay home because my immune system was at low ebb and I was at great risk for infection. I'd go out dancing.

A few years later, I looked back at my behavior in awe. The millions of dollars of biomedical research that was distilled into the knowledge, experience, procedures and drugs aimed at a disease that was costing tens of thousands of dollars to treat, and it ultimately relied on the actions of a weak, skinny, scared 20-year-old to have its impact.

I had to show up. I had to take the drugs as scheduled. I had to avoid the risks or the whole thing wouldn't work. I wasn't a very good patient, but just good enough apparently. I know I'm here today, in part, because of the skills of my doctors and nurses and how they made use of the tools of medicine: the surgery and chemotherapy and radiation. But without my participation, those tools would not have made any difference.

Health care is a shared enterprise. My role in that enterprise has been brought home to me again and again through treatment for four additional cancer diagnoses, a dangerous heart condition and the ongoing care for the conditions that that many diagnoses and that much treatment demand.

I'm impressed with the health care that is now available to treat diseases that – even a decade ago – were a death sentence. And I'm so very grateful for them. But we and our doctors and nurses often overlook just how much the success of these tools depend on our active, informed participation. We have to show up. We have to stay on the diet. We have to take the pills. We have to avoid the risks. Or we don't realize the benefits.

All of CFAH's Prepared Patient videos are available on YouTube.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

Tags for this article:
Patient Engagement   Medical Education   Jessie Gruman   Find Good Health Care   Communicate with your Doctors   Organize your Health Care   Pay for your Health Care   Make Good Treatment Decisions   Participate in your Treatment   Inside Healthcare   Medical/Hospital Practice  

Comments on this post
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don arbor says
March 19, 2014 at 7:32 PM


Your life and work are continually inspiring.